Seems like I am in a cycle of updating this blog every 4 months. I just had a couple of Dr appointments last week and remembered that it had been a while, but surprised that it had been that long. I see my BMT Dr every two months and my liver Dr about every 6 months. But when I saw my liver Dr last month, he ordered another abdominal ultrasound and another appointment which I had last week. The ultrasound showed basically the same thing as last May, though there are some abnormal lymph nodes, Lymphadenopathy. Both Drs don’t seem to be excited about it though. Just another disease to add to my list.
My ferritin and iron levels are remaining steady at 41-42 over the last two months. Normal ferritin levels are 20-300. My last phlebotomy was on September 23 and it looks like I won’t need another. I supposedly have Hemochromotosis, but so far my iron levels are steady.
Other problems that I still cope with are sensitive breasts, dry eyes & mouth, fragile skin, pain in my joints and neuropathy in my feet. My toes are always numb and it feels like I have a sock stuck in the toes of my shoes. I still check my blood glucose and take insulin shots each morning for my diabetes. I also take Creon pancreatic enzymes to aid in digestion and spironolactone & lasix to avoid fluid buildup. Finally, I am still on 10 mg of prednisone every other day. Better living through chemicals.
Other than that, I see my eye Dr next week, my BMT Dr in 2 months and my liver Dr in 3 months unless something comes up in between.
I think back over the past 6 years since I was first hospitalized and the 3 1/2 years since my BMT and am thankful to be alive today. I enjoy the time I spend babysitting my 11 month old grandson and being able to take a nap when ever I need to. God has kept me around for a purpose and though I could never work at a regular job, I enjoy life and doing what I can do from the comfort of my home.
Merry Christmas & Happy New Year
Saturday, December 18, 2010
Saturday, August 28, 2010
Delayed update
Just realized that it has been 4 months since my last update. I should have posted at least 2 months ago. In the meantime, I have seen my BMT Dr twice and my liver Dr, diabetes Dr, eye Dr and GP Dr once each.
I have also had 9 phlebotomies after reducing the schedule to every 2 weeks. My ferritin level was 134 ng/ml on June 29 and then 67 last Tuesday. It dropped faster than I though it would. Since my target is 50, I probably have reached that level with my phlebotomy yesterday. My BMT Dr has ordered another phlebotomy in 4 weeks and will check my ferritin again at my next appointment in 2 months. Since I have Hemochromotosis, I have to watch my iron intake and may have to have periodic phlebotomies for the rest of my life. After 85 phlebotomies so far, I guess I will keep eating my steaks (iron) and bear the needle some more.
I had an abdominal ultrasound in May after seeing my liver Dr. They still see the liver damage from the iron though everything else looked ok. In June, I saw my local clinic Dr since I was have pain in my nipples. My woman Dr examined my breasts and said that I had no lumps or evidence of breast cancer. At least, I didn't need a mammogram!
Also in June, I saw my diabetes Dr who measured my glucose A1C at 5.7. This compares to glucose of 126 mg/dl which is about what I measure each morning. I am still taking insulin shots each morning as well.
In mid-July, I had another bout of diarrhea and went into the BMT clinic with a stool sample. They found evidence of the Adenovirus which is common in young children, I possibly picked it up from my 7 month old grandson. I also had conjunctivitis in my eyes, possibly a complication of the virus. The eye problems persisted for about a month, so I saw my eye Dr who said the adenovirus can cause these problems which at last seem to be clearing up. Unfortunately, she also found evidence of cataracts starting in both eyes. This is a complication of long-term use of prednisone of which I still take 10 mg every other day.
Finally, I am still taking 10 different medications with only one change in the last couple of months. My insurance company informed me that the FDA had dropped their approval of Viokase and Creon was prescribed instead. This provides a substitute for my lack of pancreatic enzymes to digest fats.
I have also had 9 phlebotomies after reducing the schedule to every 2 weeks. My ferritin level was 134 ng/ml on June 29 and then 67 last Tuesday. It dropped faster than I though it would. Since my target is 50, I probably have reached that level with my phlebotomy yesterday. My BMT Dr has ordered another phlebotomy in 4 weeks and will check my ferritin again at my next appointment in 2 months. Since I have Hemochromotosis, I have to watch my iron intake and may have to have periodic phlebotomies for the rest of my life. After 85 phlebotomies so far, I guess I will keep eating my steaks (iron) and bear the needle some more.
I had an abdominal ultrasound in May after seeing my liver Dr. They still see the liver damage from the iron though everything else looked ok. In June, I saw my local clinic Dr since I was have pain in my nipples. My woman Dr examined my breasts and said that I had no lumps or evidence of breast cancer. At least, I didn't need a mammogram!
Also in June, I saw my diabetes Dr who measured my glucose A1C at 5.7. This compares to glucose of 126 mg/dl which is about what I measure each morning. I am still taking insulin shots each morning as well.
In mid-July, I had another bout of diarrhea and went into the BMT clinic with a stool sample. They found evidence of the Adenovirus which is common in young children, I possibly picked it up from my 7 month old grandson. I also had conjunctivitis in my eyes, possibly a complication of the virus. The eye problems persisted for about a month, so I saw my eye Dr who said the adenovirus can cause these problems which at last seem to be clearing up. Unfortunately, she also found evidence of cataracts starting in both eyes. This is a complication of long-term use of prednisone of which I still take 10 mg every other day.
Finally, I am still taking 10 different medications with only one change in the last couple of months. My insurance company informed me that the FDA had dropped their approval of Viokase and Creon was prescribed instead. This provides a substitute for my lack of pancreatic enzymes to digest fats.
Thursday, April 22, 2010
Out of blood?
Well, I got my ferritin down to 284 ng/ml this week, but still need more phlebotomies to get down further to 50. Doctor's new order is to let blood every two weeks, but it is getting slower. Over the last 8 weeks the rate of reduction has dropped to 24 ng/ml per week. It was a 55 drop per week during the previous 8 weeks and 76 before that. Assuming an average drop of 5% per time, it will take me another 34 times or over year to get down to the target 50 ng/ml. The rate is dropping at an ever lower difference since it is .95x.95x.95...the more I have taken out the less is taken out. A point of comparison is that the average daily consumption (and elimination) of iron is 50 mg per week, I have about 2500 mg in my body and I have been having 24 mg per week removed.
Then on top of this, my hematocrit of 37.3% was too low to take blood today. It has to be at least 38%. My blood pressure was 94/57 which is low as well. Maybe I am running out of blood! Actually, my hematocrit was 39.3 on Tuesday at the Dr office so it may just be a variation in measurement or maybe I drank more before my appt this morning than I did on Tuesday. I have another phlebotomy scheduled for next week so will see how everything holds up.
I also had a special T-cell test this week with a reported Absolute CD4 of 682 which is supposedly good. This means that I no longer need the Pentamidine nebulizer treatment this month or hopefully in the future. Because I do not fluid retention problems, I get to reduce my Spironolactone pills to one each day. Still taking 9 different pills a day plus an insulin injection. I have a liver Dr appt on May 11 and will see what he thinks about all these changes.
Then on top of this, my hematocrit of 37.3% was too low to take blood today. It has to be at least 38%. My blood pressure was 94/57 which is low as well. Maybe I am running out of blood! Actually, my hematocrit was 39.3 on Tuesday at the Dr office so it may just be a variation in measurement or maybe I drank more before my appt this morning than I did on Tuesday. I have another phlebotomy scheduled for next week so will see how everything holds up.
I also had a special T-cell test this week with a reported Absolute CD4 of 682 which is supposedly good. This means that I no longer need the Pentamidine nebulizer treatment this month or hopefully in the future. Because I do not fluid retention problems, I get to reduce my Spironolactone pills to one each day. Still taking 9 different pills a day plus an insulin injection. I have a liver Dr appt on May 11 and will see what he thinks about all these changes.
Friday, February 26, 2010
Routine Status
It has been 2 months since my last status since things have been pretty routine. I continue to have Phlebotomies every week though now on Thursday afternoons instead of the morning. This gives me time in the morning to babysit my new grandson (born Jan 10) and then take my nap later in the afternoon. Otherwise, having the Phlebotomy in the morning wasted most of the day.I take a nap every afternoon since I am also up until 1:30 or 2:00am every night watching the new baby.
I also saw my BMT Dr on Tuesday this week, a full 9 weeks since I saw him last. My ferritin level is down another 495 points to 475. The rate of reduction is slowing, now at 55 ng/ml per week instead of 76 in the previous 2 months. The slowing rate seems natural since the iron is less concentrated, less is taken out with the same volume of blood. Normal levels are 12-300 ng/ml for males so I may only have another 4 weeks to be back in the normal range.
I also continue to have the Pentamidine nebulizer treatment every month. A few weeks ago I had a Hepatitis B vaccination and need a few followup shots as well. I just stopped taking the Leviquin antibiotic so need to be cautious of any signs of bacterial infections. I was on Leviquin for 8 months after my BMT, then off for most of 2008 and back on it since my hospitalization in Dec 2008.
I also saw my BMT Dr on Tuesday this week, a full 9 weeks since I saw him last. My ferritin level is down another 495 points to 475. The rate of reduction is slowing, now at 55 ng/ml per week instead of 76 in the previous 2 months. The slowing rate seems natural since the iron is less concentrated, less is taken out with the same volume of blood. Normal levels are 12-300 ng/ml for males so I may only have another 4 weeks to be back in the normal range.
I also continue to have the Pentamidine nebulizer treatment every month. A few weeks ago I had a Hepatitis B vaccination and need a few followup shots as well. I just stopped taking the Leviquin antibiotic so need to be cautious of any signs of bacterial infections. I was on Leviquin for 8 months after my BMT, then off for most of 2008 and back on it since my hospitalization in Dec 2008.
Tuesday, December 29, 2009
Iron Levels Reduced
I am on a schedule of Dr. appointments every two months, but still have a monthly treatment of Pentamidine nebulizer for my lungs. I had my Dr appt last week and the nebulizer today. Most importantly, I got the results of my blood tests from last week and my ferritin level was down to 970ng/ml. Normal is at most 200 and it was 1556 two months ago. That's a drop of 586 in 8 weeks or 76 ng/ml per week. This is a little slower than it was earlier when it was dropping about 100 points per week. I can look for my weekly phlebotomies for a few more months anyway.
The Dr has also reduced my prednisone to 15 mg every other day. It was 20 mg and will reduce to 10 mg next month. We will see how I fare at the lower levels. Last year about this time I was down to 2.5 mg every other day when I was hospitalized with a bad bout of diarrhea and my prednisone was jumped back to 60 mg per day. Hopefully, I can get off the prednisone and maybe the insulin as well.
The Dr has also reduced my prednisone to 15 mg every other day. It was 20 mg and will reduce to 10 mg next month. We will see how I fare at the lower levels. Last year about this time I was down to 2.5 mg every other day when I was hospitalized with a bad bout of diarrhea and my prednisone was jumped back to 60 mg per day. Hopefully, I can get off the prednisone and maybe the insulin as well.
Monday, November 23, 2009
ICD
ICD is the common abbreviation for The International Statistical Classification of Diseases and Related Health Problems. I have seen these codes before on forms that my BMT doctor has submitted to my disability insurance company but just figured out what they stand for. Full details of all the codes can be found at the ICD Data web site.
In particular, three codes that are used for me are:
Primary - Myeloproliferative Disease 238.79
Secondary - Graft versus Host Disease 279.50
Other - Iron Overload/Hemochromatosis 275.0
If you are interested in looking up other diseases, look at the ICD Index.
In particular, three codes that are used for me are:
Primary - Myeloproliferative Disease 238.79
Secondary - Graft versus Host Disease 279.50
Other - Iron Overload/Hemochromatosis 275.0
If you are interested in looking up other diseases, look at the ICD Index.
Thursday, October 29, 2009
Steady State
It seems like I have reached a steady state in my health status. My lab results are about the same over the past several months with the exception of my ferritin iron level. Two months have elapsed since my last report since that is the time between Dr appointments with the BMT Clinic. I did see the neurologist last week for the numbness in my feet and will see the hepatologist for my liver next week.
I still have phlebotomies every Thursday morning as I did today. The Ambulatory Care Unit measures my hematocrit only to make sure it is above 38 percent. Last week it was 40.6, but was 38.4 on Monday when I had blood drawn at the BMT Clinic. This morning it was back up to 41.9. This may just be variation in the accuracy and techniques used to measure it.
The phlebotomies are having a beneficial effect since my ferritin level is down to 1556. It was 2234 in August and 2618 in July. I actually skipped a week in Sept so it still appears to be dropping about 100 ng/mL per week. At this rate, maybe I will be over this problem in 3 to 4 more months.
My BMT Dr is studying my case further relative to why my iron levels caused cirrhosis of the liver. An HFE gene which causes Haemochromatosis was discovered last February. Interestingly, the HFE test was done on my pre-BMT blood which was saved for purposes like this. The Dr said he has presented my case to other hematologists and thinking about to writing a paper including me as a co-author.
My long term disability (LTD) insurance company is requesting an update on my medical history over the past six months to determine if they will continue the LTD payments. One these days I may have to find a new job. My past employer (who still provides health and life insurance) just laid off 350 people so I doubt that there will be a job for me to go back to. I continue to keep up on information technology through user groups, conferences, on-line webinars and self study. I could possibly take early retirement, but insurance would be the biggest obstacle.
I still have phlebotomies every Thursday morning as I did today. The Ambulatory Care Unit measures my hematocrit only to make sure it is above 38 percent. Last week it was 40.6, but was 38.4 on Monday when I had blood drawn at the BMT Clinic. This morning it was back up to 41.9. This may just be variation in the accuracy and techniques used to measure it.
The phlebotomies are having a beneficial effect since my ferritin level is down to 1556. It was 2234 in August and 2618 in July. I actually skipped a week in Sept so it still appears to be dropping about 100 ng/mL per week. At this rate, maybe I will be over this problem in 3 to 4 more months.
My BMT Dr is studying my case further relative to why my iron levels caused cirrhosis of the liver. An HFE gene which causes Haemochromatosis was discovered last February. Interestingly, the HFE test was done on my pre-BMT blood which was saved for purposes like this. The Dr said he has presented my case to other hematologists and thinking about to writing a paper including me as a co-author.
My long term disability (LTD) insurance company is requesting an update on my medical history over the past six months to determine if they will continue the LTD payments. One these days I may have to find a new job. My past employer (who still provides health and life insurance) just laid off 350 people so I doubt that there will be a job for me to go back to. I continue to keep up on information technology through user groups, conferences, on-line webinars and self study. I could possibly take early retirement, but insurance would be the biggest obstacle.
Thursday, August 27, 2009
Lower levels
I have good news that both my cholesterol and iron levels are down. The Simvastatin has taken effect and my cholesterol has dropped from 252 a month ago to 139 this week. There may be some side effects since I seem to have more joint pain.
My ferritin has dropped almost 400 points in the last month, from 2618 to 2234. At this rate it might be down to normal in 5 months though I am not sure it is a linear process. My hematocrit was only 38.8 this morning, just barely high enough for my weekly phlebotomy. It was 40.4 last week so I might have to skip a week occasionally for my blood counts to recover.
On the negative side, I have developed Purpura, purple discolorations that are caused by bleeding underneath the skin. The doctor says that the prednisone causes thinning of the skin and I must scrape the area where a spot occurs. There is no pain and the spots disappear in about a week.
It will be 2 months until my next doctor appointment if all goes well. Other than phlebotomies, I need to schedule vaccinations for Hepatitis B. I probably will not be posting in the meantime. Remember that you can subscribe to be notified of updates; see the lower right margin.
My ferritin has dropped almost 400 points in the last month, from 2618 to 2234. At this rate it might be down to normal in 5 months though I am not sure it is a linear process. My hematocrit was only 38.8 this morning, just barely high enough for my weekly phlebotomy. It was 40.4 last week so I might have to skip a week occasionally for my blood counts to recover.
On the negative side, I have developed Purpura, purple discolorations that are caused by bleeding underneath the skin. The doctor says that the prednisone causes thinning of the skin and I must scrape the area where a spot occurs. There is no pain and the spots disappear in about a week.
It will be 2 months until my next doctor appointment if all goes well. Other than phlebotomies, I need to schedule vaccinations for Hepatitis B. I probably will not be posting in the meantime. Remember that you can subscribe to be notified of updates; see the lower right margin.
Thursday, July 30, 2009
High Cholesterol
As a further complication in my medical situation, I now have high cholesterol. Probably have had it for some time because I just got tested relative to my diabetes. Some of my original MPD meds suppressed it. Anyway, my total cholesterol is 252 mg/dl where recommended level is less than 200. So now, I have an new medicine, Simvastatin , to take once a day. I had to drop my Fluconazole because of serious interaction with the statin. So I keep the same number of pills per day, about 20 with the Viokase which I take with meals. I am now totally confused as to what I can eat and need to plan my diet better.
On a positive light, my ferritin (iron) level is 2618, down from as high as 11,000. The normal range is 20 to 300 so I have a way to go. I had another phlebotomy this morning in a continuing effort to lower the iron in my body. In contrast, my wife has been to the same clinic to get an iron transfusion since her iron is too low.
I have another appointment with my liver doctor next week so should learn more about how I cope with the diet issues between iron overload, pancreatitis, diabetes and high cholesterol.
On a positive light, my ferritin (iron) level is 2618, down from as high as 11,000. The normal range is 20 to 300 so I have a way to go. I had another phlebotomy this morning in a continuing effort to lower the iron in my body. In contrast, my wife has been to the same clinic to get an iron transfusion since her iron is too low.
I have another appointment with my liver doctor next week so should learn more about how I cope with the diet issues between iron overload, pancreatitis, diabetes and high cholesterol.
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.
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.
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).
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.
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.)
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.
Tuesday, May 19, 2009
Two-year Rebirthday
Actually, it was 2 yrs and 10 days ago on May 9th that I had my bone marrow transplant. May 9th is also my real birthday, 61 years ago on Mother's Day. My transplant was actually a stem cell transplant and happened over a two day period starting on May 8th. You can read about those days starting on the May 1 post. This is really my second rebirth day since I accepted Jesus Christ as my personal savior about 45 years ago. That was at the Blessed Hope Bible Camp named after the Bible verse: Titus 2:13 "Looking for that blessed hope, and the glorious appearing of the great God and our Saviour Jesus Christ."
Back to today, I officially was told last week that I have Type II Diabetes. I am now testing my blood glucose 4 times a day, before meals and before going to bed. I take 12 units of insulin in the morning just after testing my glucose level. After 5 days, I still have not seen any effect from the insulin, but have a diabetes clinic appointment this afternoon to get further instructions.
I am not sure of the cause, but my toes are numb. It makes my right foot feel like I have a sock bunched up in the toe of my shoe. It feels the same with different socks and different shoes. I saw my orthopedist last week about the arthritis in my knees. He thought maybe the numbness was due to swelling in my knees pressing on nerves to my feet so I now have an EMG scheduled for June 2. It may also be from the diabetes. I was investigating getting the knee replacement that I had scheduled in Nov 2004, but my BMT doctor advises against it. If my arthritis gets to bad, I can probably get cortisone shots.
Actually the prednisone that I am taking helps the inflamation. A year ago when I was almost off of prednisone, my arthritis really flaired up. I am staying on a a constant dose of prednisone (alternating between 20 and 10mg each day) over the next six weeks until my next BMT appointment.
My disability insurance just reviewed my case and extended my disability status for another period. One of these days, I plan to post a summary of the past 5 years though you can read all the details in the past postings on this blog. See the sidebar on the right.
Back to today, I officially was told last week that I have Type II Diabetes. I am now testing my blood glucose 4 times a day, before meals and before going to bed. I take 12 units of insulin in the morning just after testing my glucose level. After 5 days, I still have not seen any effect from the insulin, but have a diabetes clinic appointment this afternoon to get further instructions.
I am not sure of the cause, but my toes are numb. It makes my right foot feel like I have a sock bunched up in the toe of my shoe. It feels the same with different socks and different shoes. I saw my orthopedist last week about the arthritis in my knees. He thought maybe the numbness was due to swelling in my knees pressing on nerves to my feet so I now have an EMG scheduled for June 2. It may also be from the diabetes. I was investigating getting the knee replacement that I had scheduled in Nov 2004, but my BMT doctor advises against it. If my arthritis gets to bad, I can probably get cortisone shots.
Actually the prednisone that I am taking helps the inflamation. A year ago when I was almost off of prednisone, my arthritis really flaired up. I am staying on a a constant dose of prednisone (alternating between 20 and 10mg each day) over the next six weeks until my next BMT appointment.
My disability insurance just reviewed my case and extended my disability status for another period. One of these days, I plan to post a summary of the past 5 years though you can read all the details in the past postings on this blog. See the sidebar on the right.
Saturday, May 02, 2009
Diabetes Testing
I had an appointment with the Diabetes Clinic on Thursday afternoon after I had my phlebotomy in the morning. A physician assistant (PA) reviewed my lab history over the past 4 years and gave me an A1C test. This test is kind of an average of the blood glucose level over the past 120 days, the average life of a red blood cell. My A1C level was 5.9% while my glucose level that day was 163 mg/dL which doesn't quite correlate. Seven percent is supposed to correlate with 150 mg/dL. I picked up a One-Touch blood glucose tester for home use and since have seen a range of 103 before breakfast yesterday to 252 just before dinner today. I will monitor it for a couple of weeks and then the PA will determine what is next. It could be Type II diabetes, but almost certainly elevated due to the high levels of prednisone that I have been taking for the last 2 years. We discussed possible medicines to use in lieu of insulin shots.
My hematocrit has started recovering after the phlebotomies, 42.6 this week after 40.8 last week. Next week I see the liver specialist on Tuesday and have my 2-yr bone marrow biopsy on Friday. This is the 11th biopsy which involves sticking a big needle into my hip bone. Saturday is actually my 2-yr re-birthday since the BMT as well as being my actual birthday, 61 yrs ago. On May 12, I meet again with my BMT doctor and review the biopsy results. I will report next after that appointment.
My hematocrit has started recovering after the phlebotomies, 42.6 this week after 40.8 last week. Next week I see the liver specialist on Tuesday and have my 2-yr bone marrow biopsy on Friday. This is the 11th biopsy which involves sticking a big needle into my hip bone. Saturday is actually my 2-yr re-birthday since the BMT as well as being my actual birthday, 61 yrs ago. On May 12, I meet again with my BMT doctor and review the biopsy results. I will report next after that appointment.
Thursday, April 23, 2009
Diabetes?
Just when I start feeling better, something new comes up. This time it is my glucose level, 274 mg/dL last week though even higher at 335 before that. 60 to 99 is considered normal. So next week I have an appointment with the Diabetes Clinic to get that checked out further.
On the plus side, my liver functions seem to be improving. My alkaline phosphatase is down to 161 U/L from a high of 587 in February. ALT (47) and AST (77) are essentially normal.
I have another phlebotomy today (Thursday) and will be interested in what my hematocrit will be. This is the 6th week in a row and my hematocrit has been dropping each time. Last week it was down to 41.4%, I felt light-headed afterward and had to wait about 30 minutes before leaving the clinic. It was 45.6 a month ago and 38 is the lower limit for proceeding with the phlebotomy. I may have to skip a week sometime to let my red blood cell count recover.
I am proceeding with further taper on the prednisone and am on hold for the Fluconazole. I have been on Fluconazole for fungal infections since back in 2007. I was off it for a few months last Fall before I had the bad bout of diarrhea. Not sure how that is related.
The Dr thought I could probably go back to work until I reminded him that this is the third cycle that I have reduced my prednisone and I am still not to the level I was at in Novemeber when everything went crazy. He agreed that we probably have a few more months to go before knowing what the minimum level I need. I was down to 2.5mg every other day and am still alternating between 15 and 20mg each day now.
Anyway, your prayers are appreciated as I weather the new complications.
On the plus side, my liver functions seem to be improving. My alkaline phosphatase is down to 161 U/L from a high of 587 in February. ALT (47) and AST (77) are essentially normal.
I have another phlebotomy today (Thursday) and will be interested in what my hematocrit will be. This is the 6th week in a row and my hematocrit has been dropping each time. Last week it was down to 41.4%, I felt light-headed afterward and had to wait about 30 minutes before leaving the clinic. It was 45.6 a month ago and 38 is the lower limit for proceeding with the phlebotomy. I may have to skip a week sometime to let my red blood cell count recover.
I am proceeding with further taper on the prednisone and am on hold for the Fluconazole. I have been on Fluconazole for fungal infections since back in 2007. I was off it for a few months last Fall before I had the bad bout of diarrhea. Not sure how that is related.
The Dr thought I could probably go back to work until I reminded him that this is the third cycle that I have reduced my prednisone and I am still not to the level I was at in Novemeber when everything went crazy. He agreed that we probably have a few more months to go before knowing what the minimum level I need. I was down to 2.5mg every other day and am still alternating between 15 and 20mg each day now.
Anyway, your prayers are appreciated as I weather the new complications.
Saturday, March 28, 2009
Phlebotomies
I started having phlebotomies a year ago to reduce my iron level. I have been having them every two weeks except when my medical status would not allow. The count so far is 23. I may need 93 of them to match the number of blood transfusions from which I accumulated the iron. This is a rough estimate since the transfusions were packed red blood cells and the phlebs are whole blood. With at least 70 to go, it would take me another 3 years to get my iron back to normal.
Since others people having phlebs have tolerated them every week or even twice a week, I asked my Dr if I could get them more frequently. He agreed and Thursday I had another with only a week since the previous one. Everything went well. My hematocrit had recovered to 44 in the one week from the 45 level before the previous one. The hematocrit is checked before the phleb but not after. The threshold level to proceed is 38. My blood pressure dropped only a few points to 116/66 after the phleb. So I am now scheduled for phlebs every Thursday. If I can sustain this rate, I may be back in normal range within 18 months.
On the fluid front, I have not taken any Lasix since Monday. My weight has been steady at about 196 lbs and if it goes over 200, I will take another Lasix. Otherwise, I am feeling fine though tire easily and don't have the the physical strength that I used to.
Since others people having phlebs have tolerated them every week or even twice a week, I asked my Dr if I could get them more frequently. He agreed and Thursday I had another with only a week since the previous one. Everything went well. My hematocrit had recovered to 44 in the one week from the 45 level before the previous one. The hematocrit is checked before the phleb but not after. The threshold level to proceed is 38. My blood pressure dropped only a few points to 116/66 after the phleb. So I am now scheduled for phlebs every Thursday. If I can sustain this rate, I may be back in normal range within 18 months.
On the fluid front, I have not taken any Lasix since Monday. My weight has been steady at about 196 lbs and if it goes over 200, I will take another Lasix. Otherwise, I am feeling fine though tire easily and don't have the the physical strength that I used to.
Monday, March 23, 2009
To Pee Or Not To Pee
Seems like one of my challenges now is to balance my fluid levels and subsequently my weight. Three months ago, I weighed 239 lbs with a lot of fluid buildup. With treatments including diuretics like Lasix, I was down to 198 lbs on March 10. Unfortunately, my blood pressure was also down to 99/63 sitting and 77/44 standing and I was faint and light-headed. I got IV fluids and dropped the Lasix and blood pressure medicine. Then in the next week, I gained ten lbs back. After switching back to Lasix, I spent last weekend running to the bathroom. I actually urinated 20 times within a 24 hr period on Sunday and every 20 minutes during the first hours after taking the Lasix. Today, my weight was down near 190 lbs so the clinic told me to stop the Lasix again until Wed. I think this is all complicated by my diet and salt intake. So I need to monitor my weight every day and find a level of Lasix that will be just enough.
On my iron level issue, my last ferritin test was unbelievable at 11,000. Dr says it was inaccurate because of my liver so will test again next month. The last reasonable level measured was about 4000, still about 10 times the normal level. My blood iron saturation level was 86% where normal is between 20 and 55%.
I just bought "The Hemochromatosis Cookbook" from the Iron Disorders Institute. The book and the website are good sources of info on iron retention problems and dietary solutions. I am trying to figure out what foods are best to eat since some are a source of iron and others inhibit iron absorption.
On my iron level issue, my last ferritin test was unbelievable at 11,000. Dr says it was inaccurate because of my liver so will test again next month. The last reasonable level measured was about 4000, still about 10 times the normal level. My blood iron saturation level was 86% where normal is between 20 and 55%.
I just bought "The Hemochromatosis Cookbook" from the Iron Disorders Institute. The book and the website are good sources of info on iron retention problems and dietary solutions. I am trying to figure out what foods are best to eat since some are a source of iron and others inhibit iron absorption.
Subscribe to:
Posts (Atom)