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.
Saturday, March 28, 2009
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.
Wednesday, February 18, 2009
Hemochromatosis
I was back to the BMT Clinic yesterday for my weekly dose of Methylprednisolone, kind of booster IV steroid to knock out the GvHD. It may be working since I have not had any diarrhea the past week though I was already feeling better before my first dose on Feb 10. My prednisone dosage was also reduced from 30mg per day to alternating between 30 and 20mg each day. Since I had both the regular dose and the IV booster, I am again writing this in the middle of the night.
I also had a phlebotomy last Thursday, so my hemoglobin, hematocrit and red blood cell count were still down. Other counts were ok, though liver enzymes are raised, but coming down.
The Dr told me that I have a gene that may predispose me to Hemochromatosis, a condition that affects the absorption of iron. While the main cause for my iron overload and liver/pancreas problems is still thought to be all the blood transfusions, this may be a factor to contend with as well. This gene is hereditary so may have been passed down to my children and may affect others in my family tree.
While I was at the clinic, I also requested that the records department send an update on my medical history over the past couple of months to the long term disability (LTD) insurance company. They are doing a review of my LTD payments for the 2 year anniversary of my BMT in May. (I also requested a copy of the records for my own file since I don't see all of the details through my normal Dr appointments.) LTD payments are about 57% of my last paycheck, but dependent upon whether I am still considered disabled. A portion of this payment is actually through Social Security.
I also had a phlebotomy last Thursday, so my hemoglobin, hematocrit and red blood cell count were still down. Other counts were ok, though liver enzymes are raised, but coming down.
The Dr told me that I have a gene that may predispose me to Hemochromatosis, a condition that affects the absorption of iron. While the main cause for my iron overload and liver/pancreas problems is still thought to be all the blood transfusions, this may be a factor to contend with as well. This gene is hereditary so may have been passed down to my children and may affect others in my family tree.
While I was at the clinic, I also requested that the records department send an update on my medical history over the past couple of months to the long term disability (LTD) insurance company. They are doing a review of my LTD payments for the 2 year anniversary of my BMT in May. (I also requested a copy of the records for my own file since I don't see all of the details through my normal Dr appointments.) LTD payments are about 57% of my last paycheck, but dependent upon whether I am still considered disabled. A portion of this payment is actually through Social Security.
Wednesday, February 11, 2009
More diarrhea
I had my scheduled appts with the BMT Dr and the liver specialist yesterday, but not before having to go in last week. A week ago on Feb 2, I developed diarrhea again, though not as bad as before Christmas. I suffered for 3 days without leaving the house before calling the clinic on Thursday. On Friday, I brought in a stool sample and had an IV to replenish fluids. The diarrhea had let up by Friday, came back on the weekend but has been ok since Monday.
At the appts yesterday, the results of the stool sample were negative for viruses and I received my now monthly Pentamidine nebulizer treatment for bacterial infections (instead of the Bactrim). My fluid retention has reduced and I have lost 20 lbs since December. Bloods counts are good with the exception of the liver functions which seem to be improving some. I also had a methylprednisolone IV which will be repeated every week for 5 more weeks in an attempt to knock out this GvHD which is suspect for the diarrhea. The regular prednisone tablets have been tapered more to just 30mg per day. This extra steroid is the probable reason that I am writing this at 3:30am though I was out of the house for almost 12 hrs yesterday. I also took a side trip to St Paul, had dinner and attended at a NATT meeting in the evening without coming home in between.
The local NATT Stop the Clot meeting last night featured presentations by Sanofi-Aventis (makers of Lovenox) and Sigvaris. The first presentation stressed that March will be DVT Awareness month and that more people die of DVT/PE each year than from breast cancer and AIDS combined. This is important to me since I had at least 5 pulmonary embolisms 4 years ago and by the odds should not be on this earth today.
Sigvaris makes support stockings which are important to the prevention of DVT. These are commonly referred to as TED hose like they give you in the hospital for knee surgery. But I learned that "TEDs are for beds" and not for general long term preventive use, at least for those that you take home from the hospital. Sigvaris makes specific socks that fit and look better for everyday use. They are constructed to provide different presures dependent on your needs and variable pressures with more at the ankle than at the knee or thigh. A good guide to how the venous system works, their products and what you can do can be found here.
At the appts yesterday, the results of the stool sample were negative for viruses and I received my now monthly Pentamidine nebulizer treatment for bacterial infections (instead of the Bactrim). My fluid retention has reduced and I have lost 20 lbs since December. Bloods counts are good with the exception of the liver functions which seem to be improving some. I also had a methylprednisolone IV which will be repeated every week for 5 more weeks in an attempt to knock out this GvHD which is suspect for the diarrhea. The regular prednisone tablets have been tapered more to just 30mg per day. This extra steroid is the probable reason that I am writing this at 3:30am though I was out of the house for almost 12 hrs yesterday. I also took a side trip to St Paul, had dinner and attended at a NATT meeting in the evening without coming home in between.
The local NATT Stop the Clot meeting last night featured presentations by Sanofi-Aventis (makers of Lovenox) and Sigvaris. The first presentation stressed that March will be DVT Awareness month and that more people die of DVT/PE each year than from breast cancer and AIDS combined. This is important to me since I had at least 5 pulmonary embolisms 4 years ago and by the odds should not be on this earth today.
Sigvaris makes support stockings which are important to the prevention of DVT. These are commonly referred to as TED hose like they give you in the hospital for knee surgery. But I learned that "TEDs are for beds" and not for general long term preventive use, at least for those that you take home from the hospital. Sigvaris makes specific socks that fit and look better for everyday use. They are constructed to provide different presures dependent on your needs and variable pressures with more at the ankle than at the knee or thigh. A good guide to how the venous system works, their products and what you can do can be found here.
Wednesday, January 14, 2009
Cirrhosis Confirmed
Yesterday was a long day of medical tests and appointments. I started out at the BMT lab at 8am with blood tests and an antibiotic IV of Ceftriaxone, prior to my scheduled endoscopy (EGD) at 9am. My wife had dropped me off at 7:30 am, since I could not drive my self after the EGD. There was a lot of delay and the EGD did not start until about 11:30. Even before they would start they needed to confirm with a family member who would pick me up afterwards. Since I was supposed to see the liver specialist at 11am that was delayed as well.
Anyway the actual endoscopy went ok. The Dr strapped a mouth guard around my head while the nurse administered a sedative through my IV. Before I knew it, I was recovering with a minor throat irritation. The report of the exam highlighted some recent bleeding at the pylorus, between the stomach and duodenum and a hiatus hernia, though neither appeared serious. Some biopsy samples were taken, but need to be tested.
After the EGD, they pushed me in a wheelchair over to the liver Dr at about 12:30. I then saw my BMT Dr at about 3pm. Everyone seemed to be running late, but I got through it all. By the time my son got me home at 4pm, I was hungry and needed to catch up on all my pills.
Because of the bleeding and hernia, I have stopped taking blood thinners (Coumadin and Lovenox) and will double my dose of Protonix for acid reflux. Recent blood tests had indicated that my original blood clotting problems had been "cured" by the BMT anyway.
The most concerting prognosis from the liver biopsy last week was that there is scarring or cirrhosis of the liver most likely due to the iron buildup discovered before or a complication of the GvHD. The analysis of the Ascites fluid showed no infections or evidence of any tumors. Changes in treatment include a new medicine, Spironolactone, to help reduce the fluid retention and stopping of potassium which is not needed with this mew med. We will see if the Ascites returns and if I need additional drainage of the fluid. Since my blood counts are good again, I will restart the phlebotomies tomorrow and continue every two weeks, possibly for another 3 years. My next appoinments with my BMT and liver Drs is scheduled for Feb 10.
Anyway the actual endoscopy went ok. The Dr strapped a mouth guard around my head while the nurse administered a sedative through my IV. Before I knew it, I was recovering with a minor throat irritation. The report of the exam highlighted some recent bleeding at the pylorus, between the stomach and duodenum and a hiatus hernia, though neither appeared serious. Some biopsy samples were taken, but need to be tested.
After the EGD, they pushed me in a wheelchair over to the liver Dr at about 12:30. I then saw my BMT Dr at about 3pm. Everyone seemed to be running late, but I got through it all. By the time my son got me home at 4pm, I was hungry and needed to catch up on all my pills.
Because of the bleeding and hernia, I have stopped taking blood thinners (Coumadin and Lovenox) and will double my dose of Protonix for acid reflux. Recent blood tests had indicated that my original blood clotting problems had been "cured" by the BMT anyway.
The most concerting prognosis from the liver biopsy last week was that there is scarring or cirrhosis of the liver most likely due to the iron buildup discovered before or a complication of the GvHD. The analysis of the Ascites fluid showed no infections or evidence of any tumors. Changes in treatment include a new medicine, Spironolactone, to help reduce the fluid retention and stopping of potassium which is not needed with this mew med. We will see if the Ascites returns and if I need additional drainage of the fluid. Since my blood counts are good again, I will restart the phlebotomies tomorrow and continue every two weeks, possibly for another 3 years. My next appoinments with my BMT and liver Drs is scheduled for Feb 10.
Wednesday, January 07, 2009
Liver Biopsy
I had my liver biopsy today as well as paracentesis to relieve the fluid buildup. I started out with a BMT Clinic appointment where I also brought in a 24 hour urine sample that the lab will test. My regular blood counts were normal with my hemoglobin now back up to 14.4. The Dr thought he heard some irregular heart beat and ordered an immediate EKG, but no problems were found. They also monitored my EKG during the biopsy.
It took a total of 5 hours for the procedures including 2 hrs of prep and 2 hrs of monitoring afterward. It was really nothing to fear compared to the many bone marrow biopsies that I have had. They started with a quick ultrasound to decide where to poke the needles and selected both on the right side (where the liver is of course). They drained off 4 liters of fluid which weighs about 8 pounds before getting a couple of liver samples. I had a couple local lidocaine injections to numb the areas where the needles were inserted and had some other IV sedative for the biopsy itself. But I was able to see the needles on the ultrasound screen during the action and mostly felt the one as it entered the liver.
Because of the sedative, my daughter drove me to the appointment and my son picked me up. I am feeling much lighter, easier to breathe and generally a whole lot more comforttable. Hopefully, the other fluid in my legs and around my lungs will also dissapate as well. I should learn more about the testing of the fluid and liver samples next week.
It took a total of 5 hours for the procedures including 2 hrs of prep and 2 hrs of monitoring afterward. It was really nothing to fear compared to the many bone marrow biopsies that I have had. They started with a quick ultrasound to decide where to poke the needles and selected both on the right side (where the liver is of course). They drained off 4 liters of fluid which weighs about 8 pounds before getting a couple of liver samples. I had a couple local lidocaine injections to numb the areas where the needles were inserted and had some other IV sedative for the biopsy itself. But I was able to see the needles on the ultrasound screen during the action and mostly felt the one as it entered the liver.
Because of the sedative, my daughter drove me to the appointment and my son picked me up. I am feeling much lighter, easier to breathe and generally a whole lot more comforttable. Hopefully, the other fluid in my legs and around my lungs will also dissapate as well. I should learn more about the testing of the fluid and liver samples next week.
Wednesday, December 31, 2008
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
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
Tuesday, December 23, 2008
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.
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.
Monday, December 22, 2008
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!
Wednesday, December 10, 2008
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."
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."
Wednesday, November 12, 2008
18 Months & NATT
Sorry for the 2 month delay in posting, but I figured that now I have reached a major milestone, 18 months since my BMT, I should update this blog. I had my milestone checkup with my Dr yesterday, but no great changes. Last month, I reduced my prednisone medication to 5 mg every other day and today reduced again to 2.5 mg. I have been having more joint pain which may be a result. When I cut out the prednisone completely in March, I could hardly walk, so will be watching what happens now.
I am still having phlebotomies every two weeks to reduce my iron levels. An MRI of my liver last month showed that my liver is loaded with iron. My blood ferritin level was also 4074, where 150-300 is normal. It will take another 3 years at this rate to reduce my iron levels to normal. A Google search on iron overload shows that it causes fatigue and joint pain as well. This somewhat explains why I have been taking so many naps and my joint pain as well. Hopefully, the other complications of iron overload don't occur.
Last month, I also dropped the protonix and fluconozole medications, but after my complaints of heartburn to the Dr yesterday, I am back on the protonix at half the dose. I also tried to reduce the Viokase, but learned I still need it. It replaces the enzymes that my Pancreas is not producing. I actually need to take higher levels since I had more oily diarrhea in the past month.
During October, I attended a local conference call "Stop the Clot" sponsored by the National Alliance for Thrombosis & Thrombophilia (NATT). I also attended a local support group last week. You may remember that 4 years ago, I was hospitalized for the first time with pulmonary embolism (PE), three blot clots in my lungs. I had a couple more episodes in 2005. I was very fortunate since 25% of PE results in sudden death. I heartily recommend that you check out this web site and learn to recognize the symptoms.
Overall, I am very fortunate to have made it this far and have relatively minor problems. God has been watching over me and must have some purpose still in store for me, maybe just as an example for all of you.
I am still having phlebotomies every two weeks to reduce my iron levels. An MRI of my liver last month showed that my liver is loaded with iron. My blood ferritin level was also 4074, where 150-300 is normal. It will take another 3 years at this rate to reduce my iron levels to normal. A Google search on iron overload shows that it causes fatigue and joint pain as well. This somewhat explains why I have been taking so many naps and my joint pain as well. Hopefully, the other complications of iron overload don't occur.
Last month, I also dropped the protonix and fluconozole medications, but after my complaints of heartburn to the Dr yesterday, I am back on the protonix at half the dose. I also tried to reduce the Viokase, but learned I still need it. It replaces the enzymes that my Pancreas is not producing. I actually need to take higher levels since I had more oily diarrhea in the past month.
During October, I attended a local conference call "Stop the Clot" sponsored by the National Alliance for Thrombosis & Thrombophilia (NATT). I also attended a local support group last week. You may remember that 4 years ago, I was hospitalized for the first time with pulmonary embolism (PE), three blot clots in my lungs. I had a couple more episodes in 2005. I was very fortunate since 25% of PE results in sudden death. I heartily recommend that you check out this web site and learn to recognize the symptoms.
Overall, I am very fortunate to have made it this far and have relatively minor problems. God has been watching over me and must have some purpose still in store for me, maybe just as an example for all of you.
Tuesday, September 02, 2008
Steady as it goes
Six weeks have gone by since I last posted and my health situation is steady. I continue to get my INR (blot clotting) checked monthly and get phlebotomies every 2 weeks. I have another on Thursday. I saw my doctor today and all blood tests are ok. The blood test from last month confirmed that my bone marrow graft is still 100% and the common JAK2 test is still negative, both great news. To check my iron levels, I will get an MRI of my liver next week. (Maybe the MRI magentic field will suck the iron out !>) Actually, there is a new technique that can measure the iron levels stored in the liver. The Dr feels we need to check to minimize the number of additional phlebotomies that I need to reduce the iron.
Platelet count is still low at 107, but hemoglobin is over 14. All medications are the same with only another reduction in the prednisone, now at 10 mg every other day, down from 15 mg. I continue on the Viokase before every meal and notice the effect if I miss taking it. My digestion of fats is affected and I experience diarrhea within 24 hrs. I am fortunate that I feel pretty good though realize that my immune system is still compromised.
When I am too active, like mowing the lawn this morning, my right knee complains due to arthritis. On days without prednisone (like today as well), I experience more fatigue. Today, I was up at 7:30 am and then took a nap after mowing the lawn. I spent three hours with my Dr appt this afternoon and then took a 3 hr nap this evening.
Keep looking up!
Platelet count is still low at 107, but hemoglobin is over 14. All medications are the same with only another reduction in the prednisone, now at 10 mg every other day, down from 15 mg. I continue on the Viokase before every meal and notice the effect if I miss taking it. My digestion of fats is affected and I experience diarrhea within 24 hrs. I am fortunate that I feel pretty good though realize that my immune system is still compromised.
When I am too active, like mowing the lawn this morning, my right knee complains due to arthritis. On days without prednisone (like today as well), I experience more fatigue. Today, I was up at 7:30 am and then took a nap after mowing the lawn. I spent three hours with my Dr appt this afternoon and then took a 3 hr nap this evening.
Keep looking up!
Thursday, July 24, 2008
Taper Continues
Another month plus a few days have gone by since I last posted. Not much is changing on the health front. I continue to get my INR (blot clotting) checked monthly and get phlebotomies every 2 weeks. I just had one this afternoon. I saw my doctor on Tuesday and all blood tests are ok. Platelet count is still low, but hemoglobin is over 14. All medications are the same with only another reduction in the prednisone, now at 15 mg every other day, down from 20 mg. I continue on the Viokase before every meal and notice the effect if I miss taking it. My digestion of fats is affected and I experience diarrhea within 24 hrs. I am fortunate that I feel pretty good though realize that my immune system is still compromised.
When I am too active, my right knee complains due to arthritis. I am a little jealous of my wife's recent knee replacement surgery though she has gone through a tough month of recovery and therapy. On days without prednisone, I experience more fatigue. This morning I forced myself up at 6:30 for a breakfast Macintosh user meeting. That coupled with the phlebotomy, no prednisone plus too much spaghetti meant I needed a nap this evening.
But God is good. I am very fortunate to be able to complain a little after 4 years.
When I am too active, my right knee complains due to arthritis. I am a little jealous of my wife's recent knee replacement surgery though she has gone through a tough month of recovery and therapy. On days without prednisone, I experience more fatigue. This morning I forced myself up at 6:30 for a breakfast Macintosh user meeting. That coupled with the phlebotomy, no prednisone plus too much spaghetti meant I needed a nap this evening.
But God is good. I am very fortunate to be able to complain a little after 4 years.
Friday, June 20, 2008
Knee Surgery
Sorry but it has a month since I last posted. This is indicative of the fact that I am feeling good and not dwelling on my MPD which now really affects my life very little. I just have to remember to take all my medicines and try to avoid any infectious situations due to my compromised immune system. I had a Dr appt on Tuesday where he said I can consider going back to work, probably part-time at first. I have a phlebotomy every two weeks to reduce my iron levels and an INR test every 2 - 4 weeks to check my blood clotting. My blood counts are improving with the platelets now up to 107.
I may never have knee surgery due to my history of blood clots, but my wife has beat me to it. I write this while she is in surgery for a right knee replacement. She is getting it done over the Summer so she can recover to teach school in the Fall. I will post status on her recovery.
We spent 4 nights over last weekend at a resort in Bemidji. The week before we spent 3 days in Boston (Cambridge) for my daughter's graduation from Harvard. She has now moved back to MN and I helped her move into an apartment yesterday. It has been a little hectic around the house with all her stuff and her 2 cats dueling with our two cats. My son is home from college for the Summer as well, though he is still enrolled in a chemistry class. Somehow, he manages to get to that 8am class, four days a week.
Sadly, my mother-in-law died on May 24th. The funeral was at our church on May 28th after which we drove to Decorah, IA for the burial service. My father-in-law died 30 years ago and they are buried in the cemetery of his last parish. She lived near us for the last 14 years. It is sad to think of her leaving us after having such as gusto for life during her 94 years. It is now a big effort to deal with the estate and all of her collections of dishes, dolls and furniture.
Friday, May 16, 2008
One year milestone
I should have posted this a week ago, but wanted to see the results first. I had a bone marrow biopsy on May 9 which was the anniversary of my transplant last year plus also my 60th birthday. I also had a phlebotomy on Friday to reduce my iron buildup. Over the weekend, my sinus drainage got worse and I had a slight fever Saturday night. Tylenol took care of the fever but I also continued with sinus drainage, a cough and some wheezing. I saw the Dr on Tuesday afternoon at which time he said that the biopsy was all clear, but that I had a touch of pneumonia. I am now on Azithromycin as well as my other medications.
The Viokase that was prescribed for my pancreatitis has cleared up my diarrhea. Dr is not sure how long I will have to take it. It is like all the other medicines that I am on. We will taper off the meds and see if any symptoms come back. I have now reduced my prednisone down to 30mg every other day.
My blood counts remain about the same with only low platelets being a problem. My INR (blood clotting) was a little low, but is affected by the multivitamin and antibiotics that I am taking. I am having more problems with dry eyes which seem to be getting worse. Overall, it is chronic graft versus host disease that continues to cause my problems and will for the rest of my life.
Through all of this, I continue get around and am enjoying life. I attended a two day workshop at the University, taking just a couple of hours off for my Dr appointment on Tuesday. My son and I also went to a Twins game on Monday night when I didn't realize that I had pneumonia. Last night, I took a short bike ride and hope to extend that some each day. Both my son and daughter will be around for the Summer as we need to help my wife recover from a knee replacement surgery planned for June 20.
The Viokase that was prescribed for my pancreatitis has cleared up my diarrhea. Dr is not sure how long I will have to take it. It is like all the other medicines that I am on. We will taper off the meds and see if any symptoms come back. I have now reduced my prednisone down to 30mg every other day.
My blood counts remain about the same with only low platelets being a problem. My INR (blood clotting) was a little low, but is affected by the multivitamin and antibiotics that I am taking. I am having more problems with dry eyes which seem to be getting worse. Overall, it is chronic graft versus host disease that continues to cause my problems and will for the rest of my life.
Through all of this, I continue get around and am enjoying life. I attended a two day workshop at the University, taking just a couple of hours off for my Dr appointment on Tuesday. My son and I also went to a Twins game on Monday night when I didn't realize that I had pneumonia. Last night, I took a short bike ride and hope to extend that some each day. Both my son and daughter will be around for the Summer as we need to help my wife recover from a knee replacement surgery planned for June 20.
Tuesday, April 22, 2008
GET SMASHED
What do I mean by the title this time? Well, it is actually a useful mnemonic for remembering the causes of acute pancreatitis which the Dr thinks I might have. Steroids or autoimmune causes are most likely the problem. Actually, I am not sure if this would be chronic or acute pancreatitis since I have not had any pains except for cramps. My strange diarrhea has persisted for the last month and when I described how the nasty stuff looked and smelled, the Dr immediately related it to fat malabsorption. The Dr ordered a couple more blood tests to measure my amylase and lipase levels. I also got a prescription of Viokase 16 tablets which contains 16,000 units lipase, 60,000 units protease and 60,000 units amylase. I have to take 3 of these before each meal and one before a snack.
I also had another phlebotomy this afternoon. My hemoglobin was somewhat lower at 14.9 where two weeks ago it was 17.1. My platelets are still low at 81 so the phlebotomies do not seem to be helping that. The Dr told me to start taking multi-vitamins (without iron) that might affect my INR which was 1.48 today. I will have to get the INR checked again next week. My case is still strange as the Dr said he used me (unnamed) as an illustration in a recent lecture to all U of MN medical students.
The next big thing will be another bone marrow biopsy on May 9, the anniversary of my bone marrow transplant and also my 60th birthday. I see the Dr again on May 13th to get the results.
I also had another phlebotomy this afternoon. My hemoglobin was somewhat lower at 14.9 where two weeks ago it was 17.1. My platelets are still low at 81 so the phlebotomies do not seem to be helping that. The Dr told me to start taking multi-vitamins (without iron) that might affect my INR which was 1.48 today. I will have to get the INR checked again next week. My case is still strange as the Dr said he used me (unnamed) as an illustration in a recent lecture to all U of MN medical students.
The next big thing will be another bone marrow biopsy on May 9, the anniversary of my bone marrow transplant and also my 60th birthday. I see the Dr again on May 13th to get the results.
Thursday, April 10, 2008
Second Phlebotomy
I just got back from my second phlebotomy this morning. The blood certainly comes out faster than it went in before, only took 30 minutes for the whole appt. My hemoglobin was at 17.1 this morning and per the Dr's orders, they drained 500 ml. After a couple of Oreo cookies and some juice, I walked out not feeling too much worse for the wear.
After thinking about the 93 units of blood that I had transfused between June 2005 and last Fall, I decided to stop by and visit the Masonic Day Hospital where I received most of that blood. This is between the Philips Wangesteen Building where I have my BMT appointments and the Fairview University Hospital where I actually had the BMT. I believe that most of the nurses that helped me over those two years were there today and I had a great visit. For any of them reading this, I again thanks you for all of your help and kindness. They were all very professional and experts in their jobs.
After having lunch with a friend, I stopped by the Express Bike Shop in St. Paul, not too far east of the University. I donated four bicycles to their Back Door program (Youth Express) and encourage you to do the same. I had nine bicycles in my garage and needed to clean them out. Some neighbor kids took a couple and my son brought his to the university campus. That leaves two, one of which I need to work on. Now I just need to clean up the rest of the stuff including two broken snow blowers. Luckily, we did not get the 26 inches of snow that they got north of here last weekend. Real Spring seems slow in coming.
Update: Just saw this on evening news after posting earlier this afternoon:
Masons give $65M to UMinn for cancer research
After thinking about the 93 units of blood that I had transfused between June 2005 and last Fall, I decided to stop by and visit the Masonic Day Hospital where I received most of that blood. This is between the Philips Wangesteen Building where I have my BMT appointments and the Fairview University Hospital where I actually had the BMT. I believe that most of the nurses that helped me over those two years were there today and I had a great visit. For any of them reading this, I again thanks you for all of your help and kindness. They were all very professional and experts in their jobs.
After having lunch with a friend, I stopped by the Express Bike Shop in St. Paul, not too far east of the University. I donated four bicycles to their Back Door program (Youth Express) and encourage you to do the same. I had nine bicycles in my garage and needed to clean them out. Some neighbor kids took a couple and my son brought his to the university campus. That leaves two, one of which I need to work on. Now I just need to clean up the rest of the stuff including two broken snow blowers. Luckily, we did not get the 26 inches of snow that they got north of here last weekend. Real Spring seems slow in coming.
Update: Just saw this on evening news after posting earlier this afternoon:
Masons give $65M to UMinn for cancer research
Thursday, March 27, 2008
First Phlebotomy
After getting 93 units of packed red blood cells over 2+ years, the ferritin (iron) level in my body increased to unhealthy levels. The Dr has finally decided to address this and ordered phlebotomies every two weeks for the near future. We are not sure how long that will be seeing how long it was accumulating. I had my first one this morning. It is just like giving blood, except that they have to discard it. Seems like a paraphrase of an old joke is appropriate: It is better to have a lateral phlebotomy than a frontal lobotomy. (The original joke referred to a "bottle in front of me".
Interestingly, my phlebotomy was in the Apherisis lab where my brother donated his stem cells last May. In fact, I sat in the same chair next to the machine which filtered stem cells out of his blood over two days. It will be a full year on May 9th since that grand contribution to extending my life on this earth.
I also saw the Dr on Tuesday. My INR was down within range so my current level of warfarin will continue (2.5mg on Monday and 1.25mg every other day. Also I will continue my taper of prednisone (now 40mg per day tapering to 40mg every other day over the next month). My next Dr appt is on April 22nd though I will have another INR test on April 9 and another phlebotomy on April 10.
Interestingly, my phlebotomy was in the Apherisis lab where my brother donated his stem cells last May. In fact, I sat in the same chair next to the machine which filtered stem cells out of his blood over two days. It will be a full year on May 9th since that grand contribution to extending my life on this earth.
I also saw the Dr on Tuesday. My INR was down within range so my current level of warfarin will continue (2.5mg on Monday and 1.25mg every other day. Also I will continue my taper of prednisone (now 40mg per day tapering to 40mg every other day over the next month). My next Dr appt is on April 22nd though I will have another INR test on April 9 and another phlebotomy on April 10.
Sunday, March 23, 2008
Horton Hears a Who
On a whim last night, my son (home from college) and I saw a movie based on the Dr. Seuss book, "Horton Hears a Who". We went just to be entertained by this animated film, but came away talking about what meaning might be made from the script. In the movie, Horton, an elephant, discovers very small people living on a speck on a clover flower. He hears the very small voice of the Mayor of Whoville, but cannot see the residents. He carries the flower around the jungle, telling the other animals, but no one else believes him. As he rumbles around, he causes all kinds of problems (earthquakes, high winds, darkness) on the flower and in Whoville. The mayor likewise tells his town about talking with Horton, but again no one believes. They experience the effects of Horton, but don't hear him or believe that he exists.
Anyway, we thought there was symbolism in the movie about faith in God as well as listening to hear what God has to say. This morning, I woke up thinking more about this, reminding me of a CD that one of our church "Angels" gave me when I was in the hospital last May for my BMT. The CD is named "Be Still and Know [that I am God]" by Maranatha Music. As I listened again to the CD, it gave me great peace to know that He is in control. He will deliver us from all our troubles.
When I got up, I did a search on Google and found a number of different "theological" interpretations of this movie and other related Dr. Seuss books. Some relate to abortion where the little Whoville people are the unborn that are not recognized by the animals of the jungle.
Happy Easter! He is Risen!
Anyway, we thought there was symbolism in the movie about faith in God as well as listening to hear what God has to say. This morning, I woke up thinking more about this, reminding me of a CD that one of our church "Angels" gave me when I was in the hospital last May for my BMT. The CD is named "Be Still and Know [that I am God]" by Maranatha Music. As I listened again to the CD, it gave me great peace to know that He is in control. He will deliver us from all our troubles.
When I got up, I did a search on Google and found a number of different "theological" interpretations of this movie and other related Dr. Seuss books. Some relate to abortion where the little Whoville people are the unborn that are not recognized by the animals of the jungle.
Happy Easter! He is Risen!
Wednesday, March 19, 2008
Atom Subscribe Added
Since my posts have become less frequent and I figured out how to do this, I have added an Atom Subscribe feed to this blog. You will note the link down on the right side where it says "Subscribe to Posts". Click on the "Atom" link and it should open a dialog helping you to set it up further.
Atom is similar to RSS and is supported by many of the same RSS readers. It works fine for me with my Macintosh Mail program and the Safari browser. There is actually a Subscribe to this Page menu item under bookmarks in FireFox as well. If it all works well, you should get the blog posts as soon as I enter them on this blog.
Atom is similar to RSS and is supported by many of the same RSS readers. It works fine for me with my Macintosh Mail program and the Safari browser. There is actually a Subscribe to this Page menu item under bookmarks in FireFox as well. If it all works well, you should get the blog posts as soon as I enter them on this blog.
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