Five years ago, I had heart ablation for atrial fibrillation. I didn't realize that the rapid heart beat was coming back until I bought an Apple watch last Fall. I set the Health app to warn me if my heart rate went above 100. I was surprised when it alerted me a number of times when I was not active. I knew it worked when I rode my bicycle for exercise.
On my annual heart checkup in October, I mentioned this to my cardiologist who had me wear a Zio patch heart monitor stuck on my chest for two weeks. I had to keep a diary of when my heart raced and noted three episodes during the two weeks. During these episodes, it was my Apple watch that alerted me to make a note in the diary. After reviewing the recording, the doctor recommended another ablation.
The ablation was scheduled for Thursday, January 4th since I wanted to avoid any complications during the Christmas holiday period. I was scheduled for a TEE (transesophageal echocardiography) and a CT Angiogram on the day before. I also stopped taking Sotalol, which had been controlling my heart rate, five days before. But on Monday evening, I felt my heart race, my watch beeped and I almost passed out. I got my Kardia device and checked my EKG which confirmed my heart rate was 224. My daughter took me to the ER but by then the episode had passed. I was able to email my EKG records from my iPhone to the doctor who then prescribed some Metoprolol for a few days until the ablation.
As scheduled, I went in for the ablation on Thursday at 5am. They started the ablation about 8 am and I didn't wake up until about 4:30 pm in the recovery room. Doctor said they worked for 6 hours, testing my heart and burning out nodes that caused the spurious episodes of rapid heart beats. Afterwards, I couldn't sit up until 9:30 pm because of three punctures in my groin where they had pushed catheters into my femoral arteries and up into my heart. They kept me overnight in the hospital but I couldn't sleep. I had a roommate that had back surgery and called for pain relief every hour, plus played Netflix on his phone until 4 am. I found out that he had hearing problems. After I got home the next day at 11am, I went to bed and slept for 6 hours.
On Saturday, I drove 30 miles to a family gathering and spent about 10 hours before driving home. On the way home, I felt a little funny and discovered that my heart rate had been 130 during the trip. I had a few more minor episodes since but seems be under control while I continue taking Sotalol. Dr says that I may need more ablation in the future.
Tuesday, February 13, 2018
Wednesday, May 10, 2017
Ten year anniversary of my BMT
Ten years ago on May 9-10, 2007, I received a stem cell transplant from my brother. This is called a bone marrow transplant (BMT) though they just filtered stem cells from my brother's blood and infuse them into me. It took two sessions since there were not enough stem cells in the first infusion. May 9th just happened to be my 59th birthday. My brother was 70, old for this procedure but was a perfect match.
Thanks to the excellent staff on the University of Minnesota Medical Center and Fairview Hospital in Minneapolis and the grace of God, I am feeling great today. UMMC conducted the world's first BMT back in 1968. Prior to the BMT, I suffered for 2 1/2 years with myeloproliferative disease (MPD) and antiphospholipid syndrome (APS) also known as Hughe's Syndrome. My MPD was an unclassified version and possibly combined with myelodysplastic syndrome (MDS) and autoimmune hemolytic anemia.
Simply it meant that my bone marrow was producing defective red blood cells and too many platelets and I had over 90 units of blood (packed red cells) infused prior to the BMT. Interestingly, after I recovered from the BMT, I had too much iron in my body and had an equivalent number of phlebotomies. In the process, I had 12 bone marrow biopsies (BMBs) where each time they stuck a large needle into my hip bones to remove a 5 cm long 3mm diameter sample of my bone marrow plus three samples of blood. Along with all the infusions and blood tests, I have been a human pin cushion.
Prior to the BMT, I had to undergo radiation and chemotherapy over 5 day period that essentially wiped out my immune system. I literally went through "the valley of the shadow of death" (Psalms 23) and God was with me. Four years later, I had chemotherapy for Hodgkins Lymphoma over a 5 month period that progressively weakened me, but never wiped me out like the pre-BMT.
After the BMT, I suffered from Graft vs Host Disease (GvHD) where my new stem cells fought with my original immune system. Periodic BMBs monitored the progress of stem cell replacement in my bones. It was January 2008 before the engraftment was essentially 100%. My GvHD lasted to at least February of 2009.
In May of 2011, I was diagnosed with Hodgkins Lymphoma and had 5 months of chemotherapy. I was supposed to have 6 months of chemo but after 2 months a PET scan showed that the cancer was gone. They kept up the chemo every two weeks during which I progressively got weaker and weaker. I finally asked the doctor why I still needed the chemo and they stopped it.
I also developed other complications from the medications. I was on Prednisone until January of 2012 and developed diabetes. The day after I took my last Prednisone, I went into insulin shock (hypoglycemia) and my wife had to call the paramedics. That was the last time I gave myself an insulin shot though I checked my glucose levels for several months afterwards.
I was supposed to have knee replacement surgery in November 2004, but failed the preop physical and was admitted to Unity Hospital for pulmonary embolism, three blood clots in my lungs. That's when they discovered my blood and bone marrow problems. Well, after 8 years of waiting I finally had both knees replaced in March 2012.
In April 2013, I had heart ablation for atrial fibrillation and in January 2017 I had cataract surgery. I have also had a few scares with my thyroid, but biopsies of lymph nodules last year and just last month show no return of cancer.
As I posted in this blog on April 4, 2006:
The song ”Amazing Grace”, written by John Newton in the late 1700’s. It was interesting to learn that the song has been modified over the years and that the original words had a special meaning to me.
Yes, when this flesh and heart shall fail,
And mortal life shall cease;
I shall possess, within the veil,
A life of joy and peace.
The earth shall soon dissolve like snow,
The sun forbear to shine;
But God, who call’d me here below,
Will be forever mine.
Thanks to the excellent staff on the University of Minnesota Medical Center and Fairview Hospital in Minneapolis and the grace of God, I am feeling great today. UMMC conducted the world's first BMT back in 1968. Prior to the BMT, I suffered for 2 1/2 years with myeloproliferative disease (MPD) and antiphospholipid syndrome (APS) also known as Hughe's Syndrome. My MPD was an unclassified version and possibly combined with myelodysplastic syndrome (MDS) and autoimmune hemolytic anemia.
Simply it meant that my bone marrow was producing defective red blood cells and too many platelets and I had over 90 units of blood (packed red cells) infused prior to the BMT. Interestingly, after I recovered from the BMT, I had too much iron in my body and had an equivalent number of phlebotomies. In the process, I had 12 bone marrow biopsies (BMBs) where each time they stuck a large needle into my hip bones to remove a 5 cm long 3mm diameter sample of my bone marrow plus three samples of blood. Along with all the infusions and blood tests, I have been a human pin cushion.
Prior to the BMT, I had to undergo radiation and chemotherapy over 5 day period that essentially wiped out my immune system. I literally went through "the valley of the shadow of death" (Psalms 23) and God was with me. Four years later, I had chemotherapy for Hodgkins Lymphoma over a 5 month period that progressively weakened me, but never wiped me out like the pre-BMT.
After the BMT, I suffered from Graft vs Host Disease (GvHD) where my new stem cells fought with my original immune system. Periodic BMBs monitored the progress of stem cell replacement in my bones. It was January 2008 before the engraftment was essentially 100%. My GvHD lasted to at least February of 2009.
In May of 2011, I was diagnosed with Hodgkins Lymphoma and had 5 months of chemotherapy. I was supposed to have 6 months of chemo but after 2 months a PET scan showed that the cancer was gone. They kept up the chemo every two weeks during which I progressively got weaker and weaker. I finally asked the doctor why I still needed the chemo and they stopped it.
I was supposed to have knee replacement surgery in November 2004, but failed the preop physical and was admitted to Unity Hospital for pulmonary embolism, three blood clots in my lungs. That's when they discovered my blood and bone marrow problems. Well, after 8 years of waiting I finally had both knees replaced in March 2012.
In April 2013, I had heart ablation for atrial fibrillation and in January 2017 I had cataract surgery. I have also had a few scares with my thyroid, but biopsies of lymph nodules last year and just last month show no return of cancer.
As I posted in this blog on April 4, 2006:
The song ”Amazing Grace”, written by John Newton in the late 1700’s. It was interesting to learn that the song has been modified over the years and that the original words had a special meaning to me.
Yes, when this flesh and heart shall fail,
And mortal life shall cease;
I shall possess, within the veil,
A life of joy and peace.
The earth shall soon dissolve like snow,
The sun forbear to shine;
But God, who call’d me here below,
Will be forever mine.
Sunday, May 22, 2016
Thyroid Nodules and Iron Levels
It has been another year since my last post and I am feeling great. I have had CT scans every 6 months, but will no longer need them. It has been 5 years since I had Hodgkins and Dr says I am still clear of any cancer.
Over the last month I have had 5 medical appointments. My last scare was a biopsy of a couple nodules on my thyroid which turned out to be benign. Then the CT scans and Dr followup. But my iron levels are still high due to hemochromatosis and I had another phlebotomy this week. Additional are scheduled every month until I get my iron levels under control.
It has now been 9 years since I had the BMT and over 11 years since my first bout with blood problems. Praise God that I am have endured and doing fine today.
Over the last month I have had 5 medical appointments. My last scare was a biopsy of a couple nodules on my thyroid which turned out to be benign. Then the CT scans and Dr followup. But my iron levels are still high due to hemochromatosis and I had another phlebotomy this week. Additional are scheduled every month until I get my iron levels under control.
It has now been 9 years since I had the BMT and over 11 years since my first bout with blood problems. Praise God that I am have endured and doing fine today.
Sunday, March 01, 2015
It has been about 9 months since my last post because my health has been pretty good. I just had another CT scan on Monday and appointment with my Dr on Tuesday. Scan was good and no sign of Hodgkins returning. But my iron levels were a little high so I am having a phlebotomy tomorrow. First one since Sept 2010 so I hope it doesn't become a habit. I have a followup appointment in May to check my iron levels again.
I also saw my cardiologist on Friday. He said my EKG was fine. I showed my AliveCor EKG history from my iPhone app. I have had a few rapid heart rates of around 130 bpm but he said it was just regular sinus rhythm and was not concerned. My next appointment with him is in a year.
I also saw my cardiologist on Friday. He said my EKG was fine. I showed my AliveCor EKG history from my iPhone app. I have had a few rapid heart rates of around 130 bpm but he said it was just regular sinus rhythm and was not concerned. My next appointment with him is in a year.
Wednesday, June 11, 2014
Belated status.
I just got a comment on this blog that I have neglected for almost 3 years. Anyone still checking in may have thought that I died. But Praise the Lord, I am still around and feeling better than I have since 10 years ago when I was first hospitalized with pulmonary embolism. Let me summary the past three years.
My chemo for Hodgkins was successful and in January 2012, I was finally able to wean off of taking any prednisone. In fact, the day after I took the last prednisone, I went into insulin shock (hypoglycemia) while watching the evening news. My wife called the paramedics who gave me a shot of glucose to raise my blood sugar. That was the last day that I took insulin. I monitored my blood sugar for a month and was assured that I no longer had diabetes.
I was supposed to have my right knee replaced in 2004 and could not because of my other medical problems. After 8 years of delay, my left knee was bad as well and I had both knees replaced in March 2012. My cardiologist had recommended heart ablation for my atrial fibrillation but I had to delay that until March of 2013 due to the knee surgery. Since then I have just been taking Sotolol and warfarin with no further signs of fibrillation. I have a PET or CT scan every six months to check for any further problems. I fully expect to have my gall bladder removed next since I had a small attack last Fall and the CT scan in May showed growing gall stones. All blood test show normal levels.
So I may not post again but encourage all who read to have faith. I did walk through the valley of the shadow of death and God has been with me the whole way.
I just got a comment on this blog that I have neglected for almost 3 years. Anyone still checking in may have thought that I died. But Praise the Lord, I am still around and feeling better than I have since 10 years ago when I was first hospitalized with pulmonary embolism. Let me summary the past three years.
My chemo for Hodgkins was successful and in January 2012, I was finally able to wean off of taking any prednisone. In fact, the day after I took the last prednisone, I went into insulin shock (hypoglycemia) while watching the evening news. My wife called the paramedics who gave me a shot of glucose to raise my blood sugar. That was the last day that I took insulin. I monitored my blood sugar for a month and was assured that I no longer had diabetes.
I was supposed to have my right knee replaced in 2004 and could not because of my other medical problems. After 8 years of delay, my left knee was bad as well and I had both knees replaced in March 2012. My cardiologist had recommended heart ablation for my atrial fibrillation but I had to delay that until March of 2013 due to the knee surgery. Since then I have just been taking Sotolol and warfarin with no further signs of fibrillation. I have a PET or CT scan every six months to check for any further problems. I fully expect to have my gall bladder removed next since I had a small attack last Fall and the CT scan in May showed growing gall stones. All blood test show normal levels.
So I may not post again but encourage all who read to have faith. I did walk through the valley of the shadow of death and God has been with me the whole way.
Friday, July 29, 2011
Chemo is Working
Since my last posting, I have had 3 more chemo treatments with the 5th one on Wed July 27. Only had one bad day during the month on July 19th when I had to get an IV of fluids while at the clinic for a scheduled appointment. Seems like I got dehydrated from the previous days of high temps and humidity. We had water in our basement from about 8" of rain during the previous weekend and were setting up the garage for a sale. I must have overdone it and was really weak and tired by the Tuesday appointment.
Anyway, on Tuesday this week, July 26, I had a PET-CT scan before my BMT clinic checkup for my chemo session scheduled on Wednesday. While at my chemo treatment, my BMT Dr stopped by and confirmed that the PET Scan showed no evidence of active cancer cells where the original biopsies indicated or elsewhere from my "eyes to thighs". He said that almost all patients who have this good of a PET scan after only 2 cycles of chemo (4 treatments) fully recover from Hodgkins. My sister went through this same process and experience with her Hodgkins and is cancer free today. I still need to go through 4 more cycles of chemo to make sure the stuff is killed for good. Thankfully, my reaction to the chemo and followup drugs has been good. I am essentially feeling as well as I have in the past 4 years since my BMT.
Praise the Lord. He must have more for me to do here on earth.
Anyway, on Tuesday this week, July 26, I had a PET-CT scan before my BMT clinic checkup for my chemo session scheduled on Wednesday. While at my chemo treatment, my BMT Dr stopped by and confirmed that the PET Scan showed no evidence of active cancer cells where the original biopsies indicated or elsewhere from my "eyes to thighs". He said that almost all patients who have this good of a PET scan after only 2 cycles of chemo (4 treatments) fully recover from Hodgkins. My sister went through this same process and experience with her Hodgkins and is cancer free today. I still need to go through 4 more cycles of chemo to make sure the stuff is killed for good. Thankfully, my reaction to the chemo and followup drugs has been good. I am essentially feeling as well as I have in the past 4 years since my BMT.
Praise the Lord. He must have more for me to do here on earth.
Saturday, June 25, 2011
Afib, Colitis & dehydration
I was scheduled for a clinic appt on June 14th, but had to go to the ER at 5am. I woke up with more atrial fibrillation but by the time I made it to the ER, it had disappeared. I was also having loose stools so they gave me fluids. My clinic appt was postponed until the next day when the Dr said that that I had chemo induced colitis. My white cell count was also low so I got shots of Neupogen. I had a hard time sleeping since the Neupogen stimulates cell growth and pain in the bones. I was into the clinic again on Thurs and Fri to get fluids and more Neupogen. My white cell count recovered and on Monday when I went in again, I felt a lot better.
All this time they are using my new dual Power-port to take blood and give fluids. On Monday, since I was in and out with just a blood test and no fluids, we forgot that I still had the IV lumen connected to the port. It wasn't until about 3:30pm when I realized this tube hanging under my shirt. Luckily, I was able to get back to the clinic before it closed to have the lumen removed so they could also flush the port with heparin.
This week, I have been feeling pretty good since my next chemo was delayed until Wed, June 29. I see the Dr on Tues to check blood counts again and confirm the chemo appt. We will see what the next week brings.
All this time they are using my new dual Power-port to take blood and give fluids. On Monday, since I was in and out with just a blood test and no fluids, we forgot that I still had the IV lumen connected to the port. It wasn't until about 3:30pm when I realized this tube hanging under my shirt. Luckily, I was able to get back to the clinic before it closed to have the lumen removed so they could also flush the port with heparin.
This week, I have been feeling pretty good since my next chemo was delayed until Wed, June 29. I see the Dr on Tues to check blood counts again and confirm the chemo appt. We will see what the next week brings.
Saturday, June 11, 2011
Hair & Mouth
Well, the chemo is finally taking it toll on my hair. Every time I brush more comes out. Four years ago only the dark hairs fell out and I was left with wispy grey hairs, but I never lost it all or shaved it off. Just waiting to see how it looks.
My other complication is mouth sores primarily on my tongue and front lip. My sister recommended a combination of 1 Tbsp molasses and 1/2 an orange. I tried that last night but didn't taste too good and not sure how to take it. Today, my neighbor mentioned Tea Tree Oil which seems to be an Australian cure for everything. This afternoon I tried a mouthwash of the stuff and will see if it helps tonight.
Otherwise, I seem to be doing fine. I will back to the clinic on Tues to check how my blood counts are holding up.
Monday, June 06, 2011
Chemo #2
I had my second round of chemo this morning and am feeling fine. Only slept 4 hours last night and needed a nap this afternoon. The last of the superglue came off my incision with a little encouragement last night. I was there at 8:30 am and started with premeds, Benedryl and Tylenol and vital signs. They used the new ports for which I was glad are dual ported. The first try could flush but not withdraw blood so they put heparin in and used the second port which worked well. They later were able to clear the first port later. The infusion of the four drugs, ABVD, took about 2 hours. We stayed a little while to see if I would have any reaction like the first time, but lucked out and we were back home by 4:30 pm. It was good to have my wife along for support, but I should be able to drive myself next time.
The new meds are affecting my sleep, averaging about 4 hrs at night with a one hr nap during the day. I am up before my wife and working around the house. I pretty much have the routine of testing my blood, counting carbs and giving my insulin and Lovenox injections. Have to take a couple of extra drugs at home over the next three days.
Keep looking up!
The new meds are affecting my sleep, averaging about 4 hrs at night with a one hr nap during the day. I am up before my wife and working around the house. I pretty much have the routine of testing my blood, counting carbs and giving my insulin and Lovenox injections. Have to take a couple of extra drugs at home over the next three days.
Keep looking up!
Friday, June 03, 2011
Blood counts back up
I have had 2 clinic appointments this week and can report that I am feeling much better. I was dragging on Tuesday morning but perked up after my appt. My white cell and platelet counts were down so I had another appt on Thursday where both were going back up. Did not need a platelet transfusion as I had feared.
I still have a lot of bruising from all the needle pricks at the hospital and subsequent injections that I give myself. I check my blood glucose 4 times a day and give myself an insulin shot at least 4 times. I also need a daily injection of Lovenox to thin my blood following the Atrial Fibrillation last month. Hopefully, I can get back on Coumadin soon.
The incision from my dual port is healing well, but the superglue still hinders its use. Hopefully, the glue will continue to come off so that the ports can be used for my second round of chemo on Monday.
In the meantime, I am gaining strength. I have worked in the yard and garage, shopped for groceries, recycled fluorescent light bulbs, fixing stuff around the house and generally doing everything I could a couple of months ago. My son has been great in getting the lawn mowed and helping with any heavy lifting.
Your prayers are valued as I have the next round of chemo.
I still have a lot of bruising from all the needle pricks at the hospital and subsequent injections that I give myself. I check my blood glucose 4 times a day and give myself an insulin shot at least 4 times. I also need a daily injection of Lovenox to thin my blood following the Atrial Fibrillation last month. Hopefully, I can get back on Coumadin soon.
The incision from my dual port is healing well, but the superglue still hinders its use. Hopefully, the glue will continue to come off so that the ports can be used for my second round of chemo on Monday.
In the meantime, I am gaining strength. I have worked in the yard and garage, shopped for groceries, recycled fluorescent light bulbs, fixing stuff around the house and generally doing everything I could a couple of months ago. My son has been great in getting the lawn mowed and helping with any heavy lifting.
Your prayers are valued as I have the next round of chemo.
Thursday, May 26, 2011
PowerPort Implanted
I was in for out-patient surgery today and had a Bard PowerPort implanted in my right chest. As I mentioned in previous post, the PICC line I had was too much trouble to maintain for the 6 months that I will need chemo. My wife drove me to the hospital where they started about 8 AM in an outpatient room with all the vital tests to prove I could continue. At 9 AM, they moved me into an operating room where they prepared me for the surgery. Interestingly, they transferred me from the gurney to the operating table using a hover pad, an air mattress with many holes in the bottom. They inflated it with air and just floated me from one to the other.
The procedure went well though I don't remember much since I was sedated. I now have an incision about 2 inches where they placed the port with catheter under the skin and a little incision about 4 inches higher where they inserted the catheter into my right jugular vein, No stitches - all held together with superglue. The catheter continues over to my left where it ends in my superior vena cava, just like the PICC line did. The port is a duo version so that it can support two needles at once and will be used for all future blood draws or any infusions included the chemotherapy. My first use will be blood tests again on May 31 with chemo planned for June 3. There is nothing that I need to do at home to maintain it.
I was back to my out-patient room by 11 AM, had some lunch and my son picked me up at 12:30 PM. Home now and feeling good. Just bothered a bit by dry eyes, a little blurry vision and my first eye floater in about a year. Hope that clears up.
The procedure went well though I don't remember much since I was sedated. I now have an incision about 2 inches where they placed the port with catheter under the skin and a little incision about 4 inches higher where they inserted the catheter into my right jugular vein, No stitches - all held together with superglue. The catheter continues over to my left where it ends in my superior vena cava, just like the PICC line did. The port is a duo version so that it can support two needles at once and will be used for all future blood draws or any infusions included the chemotherapy. My first use will be blood tests again on May 31 with chemo planned for June 3. There is nothing that I need to do at home to maintain it.
I was back to my out-patient room by 11 AM, had some lunch and my son picked me up at 12:30 PM. Home now and feeling good. Just bothered a bit by dry eyes, a little blurry vision and my first eye floater in about a year. Hope that clears up.
Thursday, May 19, 2011
Hodgkin's Lymphoma
A lot has happened in the last 5 months and I am going to try and catch up. Key development was a diagosis of Hodgkin's Lymphoma on May 19th.
I was hospitalized for 9 days starting Feb 8 due to a bad bout of diarrhea. After about 12 hours and about as many trips to the bathroom, I was so dehydrated that I could hardly stand. My wife called 911 and I was taken to the emergency room and then checked into the hospital. Turned out it was some bug that cleaned out my whole GI tract. I was on liquid only diet for days to allow healing and the a BRAT diet (Bananas, Rice, Applesauce and Toast. I was never so glad to get out of the hospital and stopped on the way home for a Big Mac.
Again on March 15, I had a night of diarrhea again though not as bad as the previous time. I was able to walk and my wife was going to drive, but then called 911 again for an ambulance to the emergency room. Thankfully, after some fluids for my dehydration, I did not have to stay at the hospital. Unfortunately, I got stuck with the ambulance bill which I am still disputing.
Then on April 20, I woke up with weird, rapid heartbeats. I have had short episodes in the past that would come and go, but only observed once when I was in the emergency room for something else. This time it didn't stop and after an hour I had my wife call the doctor. I had enough strength to walk so she drove me to the emergency room where they diagnosed it as Atrial Fibrillation. I was checked into the hospital and monitored by EKG and had an echocardiogram. The next day I had a TEE (Transesophageal Echocardiogram) to check for any blood clots in my atrium. Since no clots, I had a Cardioversion, a procedure that shocked my heart into normal rhythm. I walked out of the hospital feeling normal in a couple of hours. The next day, I noticed the outline of the shock pad on my chest. Only ongoing treatment so far was that I went back on Coumadin blood thinner to avoid possible clots.
During these months my Alkaline Phosphatase was increasing, indicating something was changing with my liver. Doctors increased my Prednisone from 20mg every other day until I was back up to 40mg every day. An MRI of my abdomen was scheduled for May 3 to check out the cause.
I had been suffering from a sinus infection for 4 weeks when I was put on a 10 day dose of Augmentin on April 28. By May 7, I was feeling well enough to attend an all day tech conference, Mother's Day and especially on May 9, my 63rd birthday lunch with my sisters and cousin. It was 4 years ago that I had my BMT on my birthday.
While I had some temperature fluctuations with the sinus infection, on Wednesday, May 11, I started having shivers and sweats at night. On Thursday, I was very tired and on Friday morning decided I had to get into the doctor. In the meantime, the results of the MRI had indicated some suspicious lymph nodes near my liver. After initial checkup at the BMT Clinic, they checked me into the nearby hospital. Because I had been on Coumadin, they could not take a biopsy of my liver and lymph nodes until my INR clotting rating dropped to at least 1.5. They did all kinds of other tests - blood, urine, stool, Xrays, CT scans while monitoring my condition. I continued with the temperature fluctuations from below normal to as high as 103.2. Tylenol was effective and I learned to anticipate it coming on to address before it got that high again.
So on Thursday, May 19th, my INR was low enough to do the biopsies of both my liver and the lymph node. They did this with the use of a CT scanner, using a live CT images to guide the needles to their target. I had to lay on my stomach for two hours while worked through my back. They would alternate between getting a CT image of where the needle was and pushing it in a little further. Took many iterations in and out. I was sedated, but saw some of the procedure on the monitor. The result was that the lymph node showed I have Hodgkin's Lymphoma which just happens to have temperature fluctuations as a symptom.
Before treatment, I had to have more tests to set a baseline and prove that I was healthy enough to proceed. On Friday, I had two bone marrow biopsies, one on each side. They were checking to see how my BMT was holding up and whether there was any trace of Hodgkin's in my marrow. I also had a Pulmonary Function Test and a full torso CT scan that showed a few more enlarged lymph nodes.
On Saturday, I had a PICC line inserted in my left upper arm. The PICC line goes into my arm, up over my shoulder and ends in the superior vena cava entrance to my heart. This line was required since smaller peripheral veins cannot handle the chemotherapy which was started at 7pm. The regimen used was ABVD, commonly used for Hodgkin's treatment. My main reaction to the chemo was severe chills afterward, to the point that my teeth were chattering. A dose of Demerol took care of the chills, but left me with the sweats. I slept well then and had a good Sunday.
On Monday, I had training for flushing the PICC line plus advanced diabetes management. Before all of this, I would check my glucose level before breakfast and take an injection of Lantus. While in the hospital, they checked before every meal and give insulin based on glucose level plus what carbs I had just eaten. I now have to do both at home as well. After my final training, they discharged me with a stop at the pharmacy to get a whole lot of additional medications to take at home.
On Tuesday, I had a followup appt with the BMT Clinic to get an injection of Neupogen which should stimulate blood cell production to counteract the chemo effects. While there, I complained about the PICC line extensions added so that I could reach and flush them out. I had these lines hanging down to my wrist and had to keep them netted up on my arm. Doctor decided that I should have a portacath installed. That will happen on Thursday, May 26, but they removed the PICC line immediately.
All in all, I am back home, sleeping in my own bed, typing this on my Mac computer and not feeling to much worse for the wear. I walked through the valley of the shadow of death with the BMT and have had four good years. While I have a few more complications now, life is good. Thank you, God!
I was hospitalized for 9 days starting Feb 8 due to a bad bout of diarrhea. After about 12 hours and about as many trips to the bathroom, I was so dehydrated that I could hardly stand. My wife called 911 and I was taken to the emergency room and then checked into the hospital. Turned out it was some bug that cleaned out my whole GI tract. I was on liquid only diet for days to allow healing and the a BRAT diet (Bananas, Rice, Applesauce and Toast. I was never so glad to get out of the hospital and stopped on the way home for a Big Mac.
Again on March 15, I had a night of diarrhea again though not as bad as the previous time. I was able to walk and my wife was going to drive, but then called 911 again for an ambulance to the emergency room. Thankfully, after some fluids for my dehydration, I did not have to stay at the hospital. Unfortunately, I got stuck with the ambulance bill which I am still disputing.
Then on April 20, I woke up with weird, rapid heartbeats. I have had short episodes in the past that would come and go, but only observed once when I was in the emergency room for something else. This time it didn't stop and after an hour I had my wife call the doctor. I had enough strength to walk so she drove me to the emergency room where they diagnosed it as Atrial Fibrillation. I was checked into the hospital and monitored by EKG and had an echocardiogram. The next day I had a TEE (Transesophageal Echocardiogram) to check for any blood clots in my atrium. Since no clots, I had a Cardioversion, a procedure that shocked my heart into normal rhythm. I walked out of the hospital feeling normal in a couple of hours. The next day, I noticed the outline of the shock pad on my chest. Only ongoing treatment so far was that I went back on Coumadin blood thinner to avoid possible clots.
During these months my Alkaline Phosphatase was increasing, indicating something was changing with my liver. Doctors increased my Prednisone from 20mg every other day until I was back up to 40mg every day. An MRI of my abdomen was scheduled for May 3 to check out the cause.
I had been suffering from a sinus infection for 4 weeks when I was put on a 10 day dose of Augmentin on April 28. By May 7, I was feeling well enough to attend an all day tech conference, Mother's Day and especially on May 9, my 63rd birthday lunch with my sisters and cousin. It was 4 years ago that I had my BMT on my birthday.
While I had some temperature fluctuations with the sinus infection, on Wednesday, May 11, I started having shivers and sweats at night. On Thursday, I was very tired and on Friday morning decided I had to get into the doctor. In the meantime, the results of the MRI had indicated some suspicious lymph nodes near my liver. After initial checkup at the BMT Clinic, they checked me into the nearby hospital. Because I had been on Coumadin, they could not take a biopsy of my liver and lymph nodes until my INR clotting rating dropped to at least 1.5. They did all kinds of other tests - blood, urine, stool, Xrays, CT scans while monitoring my condition. I continued with the temperature fluctuations from below normal to as high as 103.2. Tylenol was effective and I learned to anticipate it coming on to address before it got that high again.
So on Thursday, May 19th, my INR was low enough to do the biopsies of both my liver and the lymph node. They did this with the use of a CT scanner, using a live CT images to guide the needles to their target. I had to lay on my stomach for two hours while worked through my back. They would alternate between getting a CT image of where the needle was and pushing it in a little further. Took many iterations in and out. I was sedated, but saw some of the procedure on the monitor. The result was that the lymph node showed I have Hodgkin's Lymphoma which just happens to have temperature fluctuations as a symptom.
Before treatment, I had to have more tests to set a baseline and prove that I was healthy enough to proceed. On Friday, I had two bone marrow biopsies, one on each side. They were checking to see how my BMT was holding up and whether there was any trace of Hodgkin's in my marrow. I also had a Pulmonary Function Test and a full torso CT scan that showed a few more enlarged lymph nodes.
On Saturday, I had a PICC line inserted in my left upper arm. The PICC line goes into my arm, up over my shoulder and ends in the superior vena cava entrance to my heart. This line was required since smaller peripheral veins cannot handle the chemotherapy which was started at 7pm. The regimen used was ABVD, commonly used for Hodgkin's treatment. My main reaction to the chemo was severe chills afterward, to the point that my teeth were chattering. A dose of Demerol took care of the chills, but left me with the sweats. I slept well then and had a good Sunday.
On Monday, I had training for flushing the PICC line plus advanced diabetes management. Before all of this, I would check my glucose level before breakfast and take an injection of Lantus. While in the hospital, they checked before every meal and give insulin based on glucose level plus what carbs I had just eaten. I now have to do both at home as well. After my final training, they discharged me with a stop at the pharmacy to get a whole lot of additional medications to take at home.
On Tuesday, I had a followup appt with the BMT Clinic to get an injection of Neupogen which should stimulate blood cell production to counteract the chemo effects. While there, I complained about the PICC line extensions added so that I could reach and flush them out. I had these lines hanging down to my wrist and had to keep them netted up on my arm. Doctor decided that I should have a portacath installed. That will happen on Thursday, May 26, but they removed the PICC line immediately.
All in all, I am back home, sleeping in my own bed, typing this on my Mac computer and not feeling to much worse for the wear. I walked through the valley of the shadow of death with the BMT and have had four good years. While I have a few more complications now, life is good. Thank you, God!
Saturday, December 18, 2010
Belated Update
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
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, 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.
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