I was a fireman from Prattville, Alabama (just out from Montgomery) who had always taken his physical well being seriously; conditioning, eating healthy, etc. Until the diagnosis of amyloidosis, I thought my health was good. I was evaluated at Boston Uni. Med. for Dec.2002, Note chain of events below:
1. January of 2001-I began to notice a fatigue feeling walking up hills deer hunting
2. March of 2001-Noticed that my chest was tight while running (I thought I must be out of shape.)
3. Aug. of 2001-Could not complete P.T. test at the fire department due to chest pain (went in for evaluation and stress test at the hospital-no significant findings)
4. Jan. of 2002-Heart cath done to eliminate concerns of pain on exertion (no blockage)
5. Aug. of 2002-Cardiologist in Montgomery is concerned about EKG, advised me to seek attention at UAB (He is to make appointment)
6. Oct. of 2002-Finally in at UAB, echocardiogram shows heart muscle too thick
7. Nov. of 2002-Heart biopsy shows amyloid, and within the next three weeks a lot has happened including: contact with other amyloidosis patients (listen to their advice), met with auto transplant team at UAB, and appointment available with Boston (12-02-03)
My main concern was that my heart is still strong enough to go through the stem cell transplant (Jim Lang says this is best) and chemo. Everyone says that time is so important, so there was much prayer that God would speedily guide us with His hand of mercy.
Updated Mon 1/13/03:
1. Went to Boston on Dec. 16 for evaluation. Found out that I have a very weak heart, however Dr. Falk says that I was a candidate, but would like me to get an E.P. test done to see if implanted defib. is necessary. (They say that my left ventricle is now enlarged to 1.8 cc).
2. Go to B'ham (UAB), and get E.P. study done. I do not have to have the implanted defibrillator. (Answer to prayer no doubt).
3. I went to Boston Medical on Feb. 5th for SCT & high dose chemo, along with my pastor (he is to stay until Feb. 14th, when my parents are to fly up and take his place. They are in their 60's and I don't think they could stay and endure the whole time). Bro. John becomes a great care taker, and makes many new friends in our 'Amyloid Family'.
2. The week of the 10th I began Epogen shots and on the 13th & 14th I gave them 8 mil. stem cells. This really made it hard on my already weak heart and I began to retain fluid, which required lasix.
3. Feb. 26th- I finally got the high dose chemo, after waiting 11 days (my heart had gotten too weak). It's taken a lot of prayers and determination to have finally gotten to this point.
4. Feb. 27th- I got my second dose of chemo (140 mg of mephalan).
5. Because of my heart involvement, most of my time is spent in the hospital, where on 7 north, a wonderful group of nurse's clock in each day. The attending physician's and staff, even down to the dietitians, are a blessing to me and my parents (my caretakers).
6. On March 15th I am discharged from the hospital. I never have nausea, serious fluid retention, mouth sores, and I keep a good appetite.
7. On March 19th my parents and I left Boston and flew back to Alabama.
8. During the next 2-3 weeks, I was very careful to wear a mask around visitors, and I continued to walk every day to increase my heart strength, as I have all along during my treatment. God is really helping me to improve.
9. From the first of April until June, I improved each day.
10. June 2- My Uncle Ronnie and I (he was with us in Boston for two weeks), fly to Boston for my 3 month evaluation. The lambda light chain analysis shows that the amyloid had decreased. Dr. Falk said that I needed to keep up the good work, my heart is doing better. Praise God for the good news!
11. From June until the end of Sept. (I was due for my 6 month checkup), I got to where hills are no longer a challenge to go up, and no lasix and I felt great. I am now able to do some yard work & even curl the dumb bells at times.
12. Sept.29th- I was evaluated for my 6 month, and receive good news. My bone marrow shows no amyloid and my heart is improving somewhat. This is wonderful! Thanks be to God and to the Amyloid Team at Boston Medical!!
13. Thank you for those who have read my story before this last update, and took the time to mention my name in your prayers. They were needed and appreciated. I am not able to return to the love of my heart (putting out fires and saving lives with the Prattville Fire Dept.), but I'm alive and doing well. God has spared me for a reason and I'll always give Him thanks for it all.
UPDATE May 2004 ~ I've been back to Boston for my one year evaluation as of Feb. 27. They told me that my blood work showed no light chains, my urine had no protein in it, but that my bone marrow showed traces of amyloid. This was a little discouraging, as my 6 month eval. showed no amyloid.
They thought it might be residue; however I am concerned, even though Dr. Skinner told me not to worry, just get another blood test in 6 months (Aug. of this year). I know the product is produced in the marrow, so I'm thinking I'd like to have another bone marrow done at B'ham soon, even
though it hurts so, just to keep on top of things. I realize that this stuff is so rapid, that time is important. With heart involvement, I cannot afford for the thing to get started again, without another treatment.
Because of heart failure, I'll never be able to hold a job like I did before (fireman), but I stay busy here on my farm that I have, doing tractor work and things.
Feb. of 2005- I've had my two year evaluation. I'm looking better, feeling better, and able to walk 4-5 miles each day. Although my light chain assay continues to show an increase in my lambda numbers, my heart has improved. I'll continue to take blood thinner, and get six month blood work done in B'ham, Al.
Feb of 2006- My three year post-treatment evaluation shows that my heart has improved enough to allow me to come off the blood thinner. I'm now able to eat more sodium and drink more fluids without any problems with fluid retention. Again this year, my blood work shows my lambda numbers going the wrong way.
March of 2007- My four year evaluation shows that I'll have to have some type of treatment again, possibly going through the SCT & HDC again. I am still doing well physically, especially when you compare me now with what I was in Feb. of 03 (Then I could hardly walk up a hill, now I walk 5 miles a day). I can fight the heart failure, but only a miracle from God will defeat this amyloid from producing. Please keep me in your prayers as I'll probably consider doing what worked in '03, HDC.
It is September of 2007 and I have returned from Boston after having that second SCT with the HDC. I feel good and await the results in 3 and 6 months and a year. I would like to thank all for the prayers and good wishes and the members of the Atlanta Support Group and all of my supporters and well wishers.