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 by 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.


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.

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.


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.

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.

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.