My Battle with Aplastic Anemia
(Click Picture for Larger View)

1993 Pre Diagnosis	ATG & Growth Factors February, 2001	June 2004 Orlando, Fl  Three Grandsons Later	2006 4 of  5	Then There Were Five

May 1, 2006 - If you are new to my journal, please read as much of this page as you want for the proper historical perspective and especially if you are a patient to appreciate the ups and downs of dealing with AA/MDS.  If you have already read this and are interested in what is happening currently, my journal has been moved to  http://aplastic.livejournal.com.

The picture on the left is me with "My Girls" at one of my favorite family times at the beach.  Michelle had graduated from college after a long battle of her own, Melanie was just starting college and Melissa was about to graduate from High School.  The proud father of three girls and lucky enough to have a loving wife who has weathered many a storm since our marriage in December of 1969.  In January of 2001, I was given six months to live and at times over the next few months I was not sure I even wanted to stick around given my quality of life at the time as evidenced by the picture in the middle taken shortly after entering the hospital for  ATG treatment.  The good news is that unlike so many others, I survived to lead a normal life and that is me over three years later in June of 2004.  As I write this update, it is September of 2004, I have returned to work, have three beautiful grandsons and a growing family.  None of that would have been possible without the loving support of my family and many others.  My journal which follows remains in its original unedited form as that is the best way to capture my journey.  I also wrote a book about the experience which can be previewed for FREE here.

This page is a personal journal of my struggle with Aplastic Anemia.  It is dedicated to my wife and family in hopes that I will be here for many years to come and we will share what we learn with others.  It will appear redundant and disorganized at times but that is a reflection of both my frustrations and my decision to leave it in its original format. 

Much of this page and connections to it will be of a personal nature so if you are here looking for facts please go to the Aplastic Anemia MDS International Foundation, Inc.  I transcribed this so that those of you who are newbies to the AA battle may pick up some tips and get an idea of what to expect.

The Readers Digest Version of My Story

I was diagnosed with SAA in January of 2001 and after having my life saved by Dr. Jeff Kirshner, I entered into the world of experimental medicine.  I was subjected to two rounds of Rabbit Serum, growth hormones, septocemia and more meds than I could count.   Then in August of 2001, I finally listened to my wife who is an RN and has taught herself about alternative healing methods. I have been following a regimen that is considered an alternative to modern medical treatments. 

The alternative approach I am now  following appears to be working for me and a few others and I recommend that you at least consider this less radical approach before you subject your body to chemotherapy, ATG, Bone Marrow Transplants and other such invasive techniques. 

I was admittedly very skeptical about the alternative approach and did the ATG twice, had serum sickness that almost killed me and have experienced two serious blood infections that had my temperature over 105 degrees. I was on more meds that I could count  including cyclosporine, steroids, folic acid, and  about ten more before I came to my senses.

As of September 8, 2002, I am golfing 5-6 days per week, visiting with my grand child, walking, talking and taking out the trash.  I have not had a Red Blood Cell Transfusion since May 24 and have not needed a platelet transfusion since July 23. At this same time last year, I was virtually flat on my back in a hospital bed being subjected to all sorts of ugly experimental approaches to healing my body.

I now know that the true healing for me started when my wife and I took control.  I changed my lifestyle from type A to a much more relaxed approach, changed my diet from McD's to "grains, greens and beans", am detoxifying my body with a daily sauna and colon cleansing routine, eat only organically grown vegetables, lots of rice, beans and lettuces, drink only pure spring water, exercise 45-60 minutes per day and get at least 1-2 hours of sunshine every day.  I also take multivitamins, B12, Co-Q10, Vitamin E, Magnasorb, Essential Oils, Glutathione and a series of allergy  and Alpha Lymphatic Factor shots developed specifically for me by the Environmental Health Center in Dallas, Texas. It may sound strange to you, but this approach has saved my life and restored me to about 85% of my formal self in about a year after the more popular treatment protocols failed.

For more details and the blow by blow, read on and explore the site in it's entirety

Sincerely,  

Bruce Lande
9/8/2002 

The Details of My Battle with Aplastic Anemia
(In its original and unedited form with apologies to anyone I may have been angry with)

Until late fall of 2000, I was a pretty normal (unless you ask my family), 52 year old.  I worked hard in the computer and internet industry, played golf, guitar, did lots of odd jobs around the house (amateur carpenter and handyman) and pretty much enjoyed life to the fullest.  Beginning in late 2000 I began to feel tired all the time and by Christmas time walking up a flight of 5 steps left me light headed and weak.  I was "yellow" according to family members and was bruising much more often than was normal.

On January 8, 2001 I went to see my General Practitioner and was referred to a hematologist.  The blood specialist immediately checked me into the emergency room where I was first confronted with the ugly news that I had a Platelet count of less than 7,000.  Normal platelet count is between 100,000 and 300,000. The oncologist performed my first bone marrow biopsy (drills into the marrow and extracts a sample for analysis) and made a preliminary diagnosis of Myelodysplastic Syndrome (MDS) and sent me to Strong Memorial Hospital . 

After a couple more visits and biopsies, the diagnosis was changed to Aplastic Anemia.  They are very closely related and the treatment protocol is the same, so it really doesn't matter much what they call this ugly thing that I have.

June of 2000

Went to see GP for physical feeling weak

No specific problems noticed but did do a CBC (Complete Blood Count)

Wrote it off to getting older and continued normal schedule

November and December of 2000

Working a very aggressive schedule on a project and kept getting weaker

Attributed to heavy schedule and ignored symptoms

Bruising, small blood spots, extreme fatigue and shortness of breath 

Dec 25, 2001 – 

Relatives noticed Jaundice and I couldn't walk up five steps without grabbing the wall!

Duh - Something must be wrong!

January 3, 2001

After working long days on project going up and down stairs with boxes

Mini seizure in hotel room – Cramps in legs and right side went numb

Finished out week and again went to see GP

January 8, 2001

Wife and daughter finally convinced me to go back to GP who recognized extreme symptoms and referred to Hematologist, Dr. Jeffrey Kirshner of Hematology Oncology Associates of Central New York. They mean it when they say "Treating Each Life With Compassion."

January 9,2001

Sent to emergency room at Community General Hospital Syracuse

CBC discovered extremely low RBC Red Blood Cells, WBC (White Blood Cells) and Platelets 3000 vs. normal of 150,000 – 400,000

Received my first platelet transfusion and 2 units of blood – Was up most of the night waiting for the xfusions to be driven in from Rochester in the middle of a blizzard.  Did not arrive until 2:00 AM

January 10, 2001

First Bone Marrow Biopsy resulted in Preliminary Diagnosis of Myleodysplasia Refractory Anemia and biopsy results were also forwarded to Strong Memorial Hospital in Rochester for further analysis. Admitted to CGH as Neutrapenic (Low Immune System and highly susceptible to disease) 

While in CGH, it was discovered I had a “Subdural Hematoma (small bleed to the brain) during my seizure so had MRI, CT Scans and EKG.  Everything was pretty much normal except for headaches caused by blood behind my eyes from the seizure.

January 15, 2001

Released from CGH and was told to take it very easy and would be seeing Hematologist twice a week for CBC.  Was also set up for first appt in Rochester for further testing and diagnosis

Brother and sister were alerted as possible sibling donors for an anticipated bone marrow transplant.  They both went to local clinics and quickly got results back to Hematologist but unfortunately they were determined not to be a match.

January 17,2001

Initial visit at Hematologist office for CBC workup and meet with Dr. Jeff Kirshner and Nurse Practitioner, Kathy Klinger.  Some doubt about initial diagnosis and will go to Rochester next week for additional testing.  Also had HLA typing done for comparison with siblings and submission to Bone Marrow Database.   Prescribed Prednisone (Steroid) to build up strength.

January 25, 2001

Initial meeting with Rochester Bone Marrow Transplant Team

Dr. Jeff Lancet, NP Lisa Weldon, Nurse Co-ordinater Darrrin (since left the team), Mike Ellis Social Worker and Mary, Financial Co-ordinator.   Answered a lot of questions and indicated that a bone marrow transplant was high risk.  They will recommend alternative treatments prior to a transplant if I do not have a sibling match (which I did not).  Another biopsy and further analysis switched diagnosis to Severe Aplastic Anemia.  SAA means my bone marrow has stopped producing blood cells properly and they are being released into my blood stream.  My T cells are destroying the stem cells before they can mature and be released into the blood. My bone marrow is hypo plastic, which means it contains a low number of flood forming stem cells. In MDS, the cells are being produced but they are malformed.  The treatment protocol for both is very similar, so the disease is not as important as the treatment strategy.  Will schedule me for admission to Strong Memorial within the next two weeks for initial Immuno Suppressant Therapy. This treatment is designed to suppress the T Cells from destroying my healthy cells, which are being allowed to enter the blood stream.  Alternative treatments are Antithymocite Globulin Therapy ATG (Horse Serum) and Anti-Human Interleuken ALG (Rabbit Serum) 

February 6, 2001

Admitted to 6^th floor of Strong Memorial and had a pretty bad initial experience being put in semi-private room with someone who had the TV on all night and did not sleep well.  Moved around to 2 other rooms before landing in a private room because of anticipated neutropenia.  While neutropenic, I am highly susceptible to disease and must be somewhat isolated.

Admitting Doctor Abboud said they had decided on ALG (Rabbit) and would get some preliminary work done in the next few days and then start the ALG.

February 7, 2001

Admitting nurse (Diane) gave me a chart explaining how the blood cells are produced and the difference between stem cells, T cells, etc.  Started on pre meds of Solumedrol, Celebrex, Protonix, Folic Acid, Diflucan and Cyclosporine.

Started on growth agents of EPO to stimulate growth of red blood cells and G-CSF for White Blood Cells and Platelets.

Dr. Abboud explained my diagnosis more thoroughly and also explained that I would probably never be 100% of my old self.  Best we could hope for with this strategy was to put the disease into remission and maybe be 75% of my old self.  I have a chronic disease that is not going to go away!  My T cells (Lymphoblast) are attacking my WBC’s, RBC’s and Platelets because they are malformed. 

The therapy is designed to suppress this activity and if successful will reduce my dependence on transfusions. (Currently getting platelets every 5-7 days and blood every 10-14 days).

There is a strong chance that I will have serum sickness of fevers, tremors, rashes, etc. so they will give me many prophylactic drugs designed to reduce the serum sickness. Next I am given the growth stimulants mentioned earlier to increase my counts prior to the ALG.  I will also need a catheter (Hickman Triple Port) and a de-sensitization process to determine allergies. 

Counts today:

ANC 1.1 – Reliable measure of body’s susceptibility to infection – Key neutropenic indicator if below 1.0 I am considered Neutropenic

Platelets 34

WBC 3.9

HCT 25

February 8, 2001

Catheter inserted and growth factors received.  The catheter sucks but it beats the heck out of IV's!

Counts today

ANC 4.1

Platelets 31      

WBC 5.4

HCT 26

February 9, 2001

Immunologists did testing for penicillin allergies, which proved to be negative

Good to go for the ALG

First dose of rabbit serum about 6:00 PM with nurse Jen

First infusion was six hours – Minor reaction near end of the infusion of flushed face

February 10, 2001

Second dose of ALG

Officially Neutropenic with ANC at .8

No fruits, salads or fresh vegetables.  Wear mask if leave room.  Visitors wear masks.

2 units of blood and 5 units of platelets

No negative reaction to ALG

February 11, 2001

Day 3 of ALG Platelets and Neutrophil low so had more platelets and blood

Blood Pressure going up 160/100

Pulse down to 43

Chest Pain

Shortness of Breath

Stopped Infusion redid premeds and finished transfusion

Halcyon for sleep at 1:30

Did 4 loops around floor for exercise

February 12, 2001

Final day of ALG

WBC -.1

Platelets 14

More platelets given

5 loops and mild upper body exercise

From February 13- 24^th

Pretty uneventful just monitoring counts and watching for serum sickness.  Doing lots of walking and exercising of my arms - lost total motion in one arm during serum sickness.

February 25 – March 3

Developed severe serum sickness with fever, hear palpitations and edema (swelling of joints).  Knocked me on my a__. I was pretty well out of it for several days and could not even get out of bed.  When I finally recovered, I lost the use of my right arm.  Could not eve lift it off the bed and was pretty frightened that it would stay that way. Also could not move my legs and had to use a walker when I finally did manage to get out of bed.  Learned how to use urinal and bed pan!  Working with physical therapist slowly got the use of my legs and arm back – Did range of motion exercises to avoid locked shoulder.

The ALG treatment essentially wiped out my immune system and I was hospitalized for 4 weeks while my body reacted to the serum ("serum sickness") and then began rebuilding itself.  During the hospitalization I was fitted with a triple lumen Hickman catheter (You will need free adobe acrobat to view the catheter - a very ugly thing that is directly attached to my aorta but saves being poked for an IV every time I need blood drawn).  Having never been hospitalized before this was an eye opening experience.  It's very different being the one in the bed vs. visiting someone else.

The Hickman procedure was referred to as minor surgery and in fact was conducted under local anesthesia but I certainly didn't enjoy it very much.  After some minor prepping, they shot some lidocaine (?sp) into my skin in my chest and then before I knew it they were poking around my heart and sticking this long plastic tube in me.  See the picture above so you're not surprised like I was!

One day after getting the Hickman, I began the ALG treatments and everything appeared to be going fine until about 4-5 days after the treatments had been completed.  I then contracted the serum sickness and the next 2 weeks was awful! Thank God I had my wife, daughters and friends around. The caregivers at Strong were fantastic and my core group has been great.  Here's my public thanks to Doctors, Mike E. Lucy, Kathy, Sharon and all the others that have helped me through the initial stages.  Thanks gang! They helped make it bearable and I realized how important it was to have family, friends and caretakers.

The serum sickness consisted of fevers, joint pain, insomnia and some other generally ugly side effects.  The most debilitating side effect was the loss of feeling in my right arm and shoulder which still remains to some extent 3 months later.  I was on a full regimen of "prophylactic medication" designed to prevent more serious effects.  I tracked my blood cell counts from the beginning and continue to do so today.  Here is my spreadsheet of the counts.  There are three worksheets.  First one is a rating of the transplant centers, second is a graph showing my troughs and third is my actual counts. Platelets only last me about a week.  That essentially says I am not making them myself at all YET!

Sue ( my wife) just commented that it is hard for us to remember what life was like before we started tracking my platelets.  I didn't even know what a platelet was five months ago and now I think about them every day.  I now take Cyclosporine twice a day (100 mg each if you are interested) but have cut down to only one other med (Diflucan, an anti fungal).  I also get a growth factor shot (neuritis) once a day and of course have to "flush my ports" every day with saline.  Anyone who has read this far and has yet to experience the treatment, feel free to email or post and I will gladly supply additional details. 

March 9,2001

Pretty much forced a discharge to beat another storm and got home about 7:00 March 9^th in a very weakened state.  Will have home care with St. Joseph’s Home Care starting Monday.  They will draw blood every Monday and Wednesday and arrange for xfusions at CGH co-coordinating with Kirshner and Lancets offices. Pretty much settled into a routine of platelets every week and blood every two weeks waiting to see if the ALG will work.  Need to give it 3-4 months.

March 15, 2001

Follow up visit with Dr. Lancet team – Really want this to work as transplant for someone my age and size is high risk and was assured that the number of transplants I receive should not be an issue (I had read that too many xfusions can be problematic as my body will build up antibodies to the foreign entities).  Will transfuse with platelets if count is below 10 and blood if Hematocrits are below 25.  Back to Syracuse and continue with home care treatment.

April 2, 2001

Discontinued home care and felt well enough to start back to a semi-normal work schedule.  Traveled to Albany and Batavia and worked in Syracuse 2-3 days per week.  Was usually pretty strong in the AM but by 3:00 would start to wear down.

April 19, 2001

Lancet follow up. No real indications that anything has worked yet.  Will give it another month and then consider a second treatment – may try the horse serum this time.

May 17, 2001

Lancet follow up.  Will schedule re-admission to Strong near the end of the month.

May 18, 2001 DX +118 days ALG/Cyclo + 95 days

Had my monthly visit to Strong Memorial Hospital in Rochester, NY.  It has now been over 3 months since my Rabbit Serum and they don't think that plus the Cyclosporine has worked as planned so are seriously considering a Horse Serum treatment in the next 1-3 weeks.  I'm packing my bags.  Oh goodie - Hospital Food and no sleep again!

May 20, 2001 DX + 120 days ALG/Cyclo + 97 days - Increase Cyclo to 200 Mg twice a day.

Possible Positive - Platelets were at 20 and HCT at 32 on Thursday.  Waiting for Monday to see confirmation.  Also some discussion about Liver Enzymes and ?Bill Ruben?- My ferine level was 2500 - normal is 250 - what to do? I a jaundiced and Sue says it is because I have too much iron and my system is not properly breaking down and disposing of dead red blood cells.

Fatigue is still definitely an issue.  I attempted to mow a flat front lawn which used to seem like no big deal and was actually looking forward to it as a way to get some exercise.  After about 1/4 of what I would have used to do, I was flat out exhausted and had all I could do to get the mower to a safe place and me into a chair.  Took me 30 minutes to restore my breathing back to normal!  

May 28^th , 2001

Admitted to Strong for ATG.  Pretest for ATG OK

Began first dose around 5:00 and had severe reaction of hives to the horse serum.  Decided to stop for tonight and try again in morning.

May 29, 2001

Trying ATG again with a heavy (750 MG ) dose of Solumedrol.  Within an hour had several hives again and decision was made to drop the ATG and try ALG again.  Will start tomorrow AM.

May 30, 2001

10:00 AM giving ALG at a very slow rate (55 CC’s per hour over ten hours).

12:00 AM – So far so good!

7:30 PM Full infusion completed- no issues

Had 750 Mg of Solumedrol Steroid

Meds for ALG June 30

Solumedrol IV – Steroid

Diflucan Pill – Anti Fungal

Tylenol – Pain/Prophylactic

Cyclosporine – Immuno suppressant

Magnesium – Keep Magnesium count up

Cymedadine – Antihistamine

Prilosec – Anti Nausea

May 31,2001

Platelet counts of 6, so had platelets at 9:00

Rabbit started at 1:30 at 60/hour – seems ok so far

Rabbit went until about 7:30 and no issues.  Went out to dinner and felt pretty good.

Took an IV shot of divan for anxiety and sleep - did the trick

Also had back pane and took two Tylenol.

June 1, 2001

Heading into my 6th month fighting this battle.  

Awakened at 4:30 for blood draw (pretty typical stuff I forget to mention early - don't expect to get any sleep while in the hospital!)

Had some potassium IV and then Solumedrol 

Rabbit started about 10:30 and was done (last dose for this time) and was done about 6:30.  Went out to dinner and felt pretty weak and but that it part of the Immunosuppresant  side effect.

Counts today:

WBC 7.6 (thanks to GSF)

RBC 2.9 Low

Hematacrits 27 (Low)

Platelets 17 (Low Low)

June 3, 2001

Discharged with reasonable counts. Waiting to see if I get serum sickness again or not.  Actually feel pretty good and am hoping maybe no serious side effects this time. Loaded up on all kinds of new meds - Magnesium, K-Door potassium and Capri.  Take more pills in one day than I ever took in my life!

June 7, 2001

Check up and CBC - counts are low but going to try to get through the week-end with no TX. 

June 12, 2001

Low "Crits" around 22 - Go for Blood TX - Uneventful but a whole day sitting in a room.  (Don't read this if you are easily offended - Diarrhea big time last night - no apparent cause?  Insomnia is also obviously a problem since I am usually updating the site till 2:00 AM.  Supposed to take a GSF shot tonight and forgot - will do in the AM!  Lucy says WBC are low. Want to know if Cytoxan is a good idea or not - Hopkins swears by it. NIGH says it killed 3 people in 3 months.  This is like Russian Roulette with people's lives!  Will talk to Lucy on Thursday I guess. Had problems with all 3 ports yesterday and today - Would not draw properly but are working ok now.

June 14, 2001

Weekly trek to Strong for shots and CBC.  Good news is that platelets held at 14,000 so have held for 12 days - longest on record - cautious optimism.  3 shots neology, eloign and GSF.  Also used some "TPA" to loosen clogged port and advised to flush twice a day.  Started on Flagil for Diareah/CDEF even though didn't have clear results back yet.  Discussed Cytoxan with Lucy - It is in their mix of options, but want to give the ALG at least 3 months first.  Then will consider Cytoxan or MUD.  At this point I'm going to have to trust they are on the right path as it seems consistent with months of what I have read.  I continue to be weak which is very frustrating - things I used to take fro granted like turning a were virtually impossible between weakness and shakes.  Should be dropping Prednisone more aggressively - Off within 5 - 7 days.  

Moving the SSA disability effort along.  Expect to hear by September retro to July for $1600/month.  Would definitely take some of the financial pressure off.  Also a good talk with Art re helping out part time if able and update from John B's venture.  

Mark Clark to host a benefit golf tournament in August and Tom Sococia DJ something - chamber will announce and back.  Need to decide what we want and most appropriate way to handle.

June 15, 2001

Had a good active day - virtually no side effects other than the normal 3:00 let down and the "prednisaone shakers'  Really comical to watch me work a mouse.  Melanie and Fred has a disastrous flight into Syracuse.  Finals arrival after bus trip from Binghamton was 3:00 AM but still great to have them with us!

June 16, 2001

Now into day # 13 with no platelet XF - dare I get optimistic?? They were only at 14 ,but that beast crashing!  - In retrospect - IT WAS A FLUKE!

Had a very nice day with the whole family in attendance capped with a bubble tying party and grilled chicken with trimmings on my new grill.  Thanks gang and especially to Richard and Michelle for assembly. It works great .  FINALLY seem to have the pool working - I get frustrated when I am unable to do what used to be simple things like turning a couple of pipe wrenches against each other.  I also have limited upper body and arm strength. Need to work on that and also lose weight!!!  Prednisone make me eat everything in site!  Tapering off Prednisone - completely free by end of next week at the latest.  Woke up with severe leg cramps about 2:00 - MSL introduced early father's day present of foot massage that really helped.  It was a great day having the whole family together and tomorrow we celebrate father's day with the Burghart's at our first official pool party (did some swimming and ate out on the picnic table night before last - was fun!

June 18, 2001

Like the song says- Some Days are Diamonds, Some Days are Stones - 

Platelets tanked!!!!! 

WBC Tanked !!!!!!!!!

I am not going to sit around and let this thing get me!   I will become my own one man research team and figure out what the heck can be done about this thing - Off I go!!!!!!  Check out the book list.

June 25, 2001 - Up and down we go.

Good News - Got a date for the Golf Benefit - Aug 18th.  After a couple of really good days with friends and just keeping up with things, I got some kind of infection and crashed again.  Golly, gee whiz this is fun!  I guess this is probably a milder form of the serum sickness. Visit to doc's today showed platelets at 6k, WBC at 1.0 and crits at 24.  Monday in for platelets, Tuesday for blood and now taking another new med for e-coli - Ceftriaxone.  Feeling pretty good right now but really has been up and down for a few days.  Sue and I did a lot of reading on chemical sensitivities, diet etc and are going to change our eating to macrobiotic, low carb.  Also started writing a more in depth article (its on my laptop in case I lose track of all this research)  on all of this from a more factual point of view with research into immunology, the blood system, immunotherapy, multiple chemical sensitivities, environmental allergies, etc. 

June 27, 2001 - Counts on Monday Platelets 6K, WBC 1.0, WBC 2.55, Crits 24.5

Study on patients who receive transplants.  Personal observation = My age is definitely working against me. If I am going to have a transplant, I should request it pretty soon - I am now 6 months since formal diagnosis and have likely had AA for at least a year since I was getting progressively weaker over a  long period of time.  Still feeling pretty lousy even after BT and PT.  I used to get a surge of energy after xf but not so the last 2x. I have received a total of 43 transfusions.  I now struggle to lift 20 lbs and I used to throw around 80 to 100 lbs bags of FERTILIZER like they were nothing.  This was a long time ago but I had at least 2 yrs of continued exposure working in a fertilizer plant. NO mask.  Breathed that stuff in all summer long.  I wonder if others who worked in similar environments have AA?   Was in for xf Monday and Tuesday. Tried to work a half day Wednesday and pretty much tanked about 2:00. Tomorrow off to Rochester for CBC and shots.  That's a pretty typical week!

June 28,2001 - The Roller Coaster Ride Continues

After feeling absolutely lousy and discouraged yesterday, today was unbelievably good!  Met with my NP Luci and we discussed what to do if the current treatment strategy does not work. She informed me that they were already considering me for a clinical trial and would be working to get me into a T Cell Depletion protocol as part of an unrelated transplant. The T Cell depletion strategy greatly reduces the risk of GVD and improves the odds of survival to 75%.  She pointed me to some information and promised to send more.  We will be researching and updating over the next few days.  We then worked with a customer and everything went like clock work.  I'm still at it and feeling almost normal.  What gives with this called AA anyways??  Discovered some real secrets on how to to research the illness.  Back on vanco (takes 1.45 hrs in the AM and same in PM vs Ceftriaxone which about 10 minutes.  Oh well, it gives me time to update the web site.

July 9,2001 - Platelet Reaction and Summary of Week

Spent almost every day this past week either in the home tonight or doctor's office .  Monday - Kirshner CBC - 5K platelets.  Tuesday - get platelets. Wednesday - fourth of july party our house. Thursday - Hematocrits go for blood tomorrow. 23  Friday - Get blood - in at 11:00,  out at 7:30 PM.  This Monday - platelets 5K - get platelets oops - big time rash reaction - 50 mg of benadryl and 2 hydracortisone shots and NO PLATELETS - go back to kirshner tomorrow!  Felt pretty lousy all week.  Even a short walk wiped me out.  I am getting progressively weaker and can't exercise to keep up my strength.

July 12, 2001 - Good News Day!

I received some very exciting news today after a thorough conversation with my care team at Strong Memorial Hospital in Rochester, NY. They are recommending me for an Unrelated Matched Donor (MUD) Bone Marrow Transplant preceded by a T Cell depletion strategy that substantially reduces the risk of Graft Vs. Host Disease (GVHD). Full details at the forum or you can subscribe to where I will be publishing lots of information about this, go to http://www.topica.com/lists/rabbitman/ click on join the list at the bottom left.  My good friend, Ray spent the whole day with me in Rochester where I had CBC, cultures, Petabamine (anit -parasitic), the usual pre meds and Platelets. Also had my 3 shots for growth stimulation Neupogen, Epogen and GSF.  Was very tired afterwards but excited about the potential transplant.  Tentatively scheduled for T-Cell Depleted BMT starting on September 17th in Rochester.  

July 31, 2001 - Aplastic Conference and Updates

We (Sue, Melissa and I) traveled to Des Moines, IA for nephew Chad and new wife Maggie wedding.  It was great to see lots of family members that we had not seen in many years and to spend time after the wedding with Sue, Melissa, Martie, Heidi and Kevin.  I was worn out for three days after two days with everyone.  Rochester arranged for a blood and platelet transfusion on Wednesday, July 25 which bumped back up a bit so I could spend two long days at the conference.  Completely ran out of gas on Sunday but now am home safe.  Kirshner office today - counts about the same as always - fully expect to get platelets on Thursday....i.e. no change.  I talked to many people at the conference about transplant and read new book by Dr. David Biro which really shook me up.  The transplant alternative looks very scarey!!  I really don't know what to do now.  If I stay with the ATG/Cyclo and nothing happens I may be opting out of the transplant alternative whether I want to or not.  If I go for the transplant I either die or go through hell with lots of serious side effects as a result.  Need to look into the Hopkins Cytoxan program - last time they did not call me back - need to try again.  It appears that the AA Foundation is very much against the Cytoxan concept.

August 8. 2001 - BMT, Chemical Sensitivity, Cytoxan and Where do I go From Here?

Had a good talk with caretakers at BMT in Rochester today.  We (Sue and I) have been seriously discussing BMT strategy vs trying other alternatives.  Reading 100 days and discussing BMT outcomes with others has me seriously second guessing the decision to go for a BMT.  Survivability does not look promising and even if I survive the potential side effects sound worse than what I am experiencing now.  SO.... we are going to hold off on the BMT til November and give the cyclosporine more time to work OR .... seriously investigating the chemical and environment illness alternative.  Sue met with Dr. Sherry Rogers, a leading practicioner of EI and they are recommending a detoxification  process at a center in Dallas.  I have started the investigation process and will keep the journal up to date.  Some new links at the links area if anyone is interested.

August 18, 2001 - ATG/Cyclosporine Officially a Failed Treatment Protocol for Me

I officially gave up on the toxic drug strategy earlier this week and have been devouring books and websites on alternative strategies.  I am off to Dallas, TX to the Environmental Health Center.  Will meet with Dr. William Rea on Monday and begin a chemical detoxification strategy.  Details on this strategy can be found at http://www.ehcd.com

I sure hope it works as I am not real excited about the possibility of a BMT and I am running out of options!

August 21, 2001 - Environmental Health Center Dallas - A last ditch effort to corral this awful thing.

Well, we're here and checked into a "clean room" environment.  We are staying in specially retrofitted old condominiums with not carpet, no padded furniture and beds that are less than comfortable (hence writing this at 2:24 AM when I should be sleeping.  

Dr. William Rea is somewhat impressive but the rest of the outfit leaves a lot to be desired.  They seem to be just going through the motions except when it comes to collecting money -they have that down to a science!  They have already collected about $5000 and I don't know whether I am being hustled or being set up for assistance. They have conducted numerous tests so far including a myriad of blood tests for which I don't yet have results and don't know what they are.  I had a "thermography" which is yet to be read, a ECG Heart Rate Variability Analysis which yielded "abnormal results".  

According to Dr. Rea, I may have constricted blood vessels which may just be related to my AA but he wants to wait for other results before prescribing a course of treatment.  I am also now fully immersed into the world of Chemical Sensitivities and growing more skeptical by the day.  If it were not for my wife's unflinching belief in the process, I would be on a plane for Syracuse.  If this stuff actually works, Dr. Rea needs to get his staff to clean up their collective act.  

He seems genuinely interested in helping me (except for remarks about it already being too late) he is either good at what he does or a good con man.  I am certainly hoping for the former as I don't have a lot of options left.  The chemical sensitivity testing requires that they inject a small portion of potentially reactive chemicals into my arm and then watch to see if i react.  So far, it has been a waste (10 minutes for each one and loads to go at $20/each) but I'm willing to give it a few more days. 

According to Sue it is indeed monotonous and time consuming but worth it in the end.  I am placing my life in her hands and trust her implicitly but am still very skeptical about all this hocus pocus stuff. On the other hand, all the conventional docs could do was make me sicker than I was before. It is a very frustrating feeling to watch all this going on and not see a demonstrable progress.  We are also now switched from the macrobiotic (greens, grains and beans) diet to a specially designed rotational diet to determine whether or not i have food allergies.  

Not sure what the point is to all of this, but I am willing to play along for awhile.  This "alternative MCS approach" has until the end of October at the latest to prove some results or I'm outta here and on my way to a transplant.  More to come ................ 

August 24, 2001

Had a terrible reaction to platelet transfusion today.  They were single donor, irradiated, leukopore, and CMV negative.  I had my normal pre-meds (tylenol, hydracortisone and benadyrl) followed by a second dose and still got slammed!  I had a burning and itching rash from the bottom of my feet to the top of my head.  Worst case yet and they finally gave me an attarax that after about an hour knocked me out. 

August 25, 2001

I am a bit more optimistic today than earlier.  I am actually feeling quite a bit better today and am hopeful that the change in environment and diet is part of it.  I have a LONG ways to go, but at least for the first time since this all started feel like I am in charge and am taking action to do something about this dreaded disease.  I have started a new page for alternative healing and will continue to expand it as I learn more about this strategy.

August 26, 2001 - The Divine Transfusion

Sunday found us in Atoka, Oklahoma with one of my oldest and best friends from high school and his wife.  We had lost touch with Rich (who was in our wedding) and Sally for almost 5 years.  Sue and Michelle found them and we made contact about a month ago.  And then, as though by divine intervention, we show up in Dallas which is only about 4 hours from them and we met for dinner yesterday.  We also went to a church in Atoka at their invitation and received a divine transfusion.  I experienced a "laying of the hands" for the first time and also a special infusion from Rich and Sally. 

August 27, 2001 - EMF testing Ok

Sue was of the opinion that one of my problems was related to overexposure to the EMF rays from computers.  Testing today proved negative so I can use computers without concern!  Dinner today is almost like real people - Hamburger, potatoes and peas!  And - I had popcorn last night.  WOW! Although I like Dr. Rea he is still reluctant to say that he can help.  I started sauna treatment today and had a massage.  Felt good but not sure what this is all going to accomplish.

September 2,2001 - Eight Months Since Diagnosis

It has now been nearly eight months since my diagnosis and I am probably more hopeful than I have been in six months.  It is way too early to declare even a small victory but judging strictly on how I feel, I think this natural healing and detoxification approach has a chance.  I reached a pinnacle today in that I was sweating massively which I have never done before and the veteran patients here say that is a big step towards ridding your body of harmful chemicals and toxins that have been building up in your digestive system and immune system for many years.  I have also been testing for chemicals, molds, foods and minerals and learning what compounds with which I may  be having problems. Once they establish what the testers call "end points" they will develop antigens to those substances which I will inject on a regular basis to help my system deal with them.  In the beginning this whole approach seemed a bit far-fetched, but at least for now, its is making some sense and I am hopeful.  I have been repeatedly cautioned that there are no "silver bullets" and this is potentially a long arduous process but I have now met some people (granted not AA types) who are finding success in dealing with diseases that other MD's have given up on. Stay tuned!  Received 3 units of blood today and some desferol.  Am hoping that this Texas blood will be my last transfusion.  Next testing will probably  be 9/14/01.  Praying, crossing my fingers and even "imaging" my immune system to do the right thing.

September 8, 2001 - Natural Healing Setback

Well, the platelet counts only held for two weeks but considering my previous record was 10 days, I am still somewhat hopeful.  Also got another infection in my site and and had a negative reaction to desferol.  Was awake most of last Friday night with fever and chills.  Oh what I would give to be "normal" again.  Spending almost full time in testing, sauna, exercising and talking with Doctors, Nurses and other patients. Platelet counts were 14,000 on Friday so my Saturday afternoon was spent getting a platelet transfusion (approaching 100 transplants now).  Had attempted to work my upper body last week to regain some strength and then contracted the infection so am backing off a bit - Will hit it again next week.  I remain cautiously optimistic but it is a lot of work to stay with this program  Oh well - Nothing ventured, nothing gained.

September 15, 2001 - Melissa & Mike Get Married

I was scheduled to fly home for the wedding on Thursday.  On Tuesday, 9/11/2001 the WTC and Pentagon were attacked so all flights were cancelled.  I left Dallas at 8:30 Wednesday morning; met Melanie and Fred in Tri Cities, TN at 10:30 PM, dropped off rental car and then completed trip to Syracuse.  We arrived on Thursday evening and thanks to unbelievable work by Sue, Melissa, Kathy and others the wedding went off beautifully.  It was a proud day for Mom and Dad to have everyone together and to witness the love shared by Mike and Melissa.  Their honeymoon had to be be postponed because of the terrorist attack but they spent a couple of days in the Poconos.

September 25,2001 - Cautious Optimism - Positive Attitude and Financial Woes

I had a CBC before leaving from Texas to Syracuse, one while I was there and one upon my return.  I feel better than I have in 6 months and my time between transfusions is increasing.  I am now exercising 20-30 minutes each day, my brain is clearing (can walk the straight line) and with the exception of a severe pain in my shoulder, am able to almost function normally.  I still sleep more than I used to but the time between transfusions (24+ das for blood and 13 das for platelets has me thinking positively about Dr. Rea and EHCD.  Time will tell.  I feel really good!

Testing continues - Had a very severe reaction to grass - no more mowing lawns for a living!  Actually getting used to the rotation diet and it doesn't seem as bad anymore.  Daily exercise, sauna and massage are working - I sweat more than I have in my entire life and am supposedly ridding my body of harmful toxins (you can tell by the SMELL!). 

Settled into my one bedroom apartment without Sue and I miss her terribly.  We talked last night but got into financial issues - VERY TROUBLING - will insurance pay for any of this?  It is costing $70 per day to stay here plus Dr. visits, vitamins, special diet, testing and now they want me to buy a sauna ($5000) and redo the new house we just moved into (or move).  No carpets where I will be spending most of my time (house is wall to wall) and he wants the furnace outside of the house because of my sensitivity to natural gas.  Who is going to pay for all this?  The money we raised in the golf tournament is long gone and we are now eating away at our retirement (which was already way down due to lousy investments).  Sue to contact patient advocate organization.  Now that I am finally making some progress health wise, the financial issues are overwhelming!

The Waiting Game

An observation on waiting.  Since being diagnosed with AA, I have spent more time waiting than ever before in my life.  

1. It started with going to Dr. Kirshner office and waiting to be called for my blood draw, then waiting for results and to see Dr or Kathy.  Then waiting to get set up for transfusion.  Then waiting in the admitting room to be checked in.  Then waiting for whomever is to give me transfusion, then waiting for paperwork, then waiting for meds, then waiting for platelets or blood to show up, then watching the drip drip drip of the IV.

2. More waiting at BMT unit and hospital.  Waiting to see docs, waiting for meds, being awakened at all hours for blood checks, Waiting to go home.

3. Go to EHCD and watch the clock while I exercise and sauna.  Go for testing and wait minutes between tests ("Needles" sticks me about 15-20 times a day and I sit an wait in between sticks with no diversions - no TV, radio, books, computers, etc. and the conversation gets old - BORING!)

4. Wait for food to cook - Everything has to be cooked from scratch.

I have always been task oriented so this waiting has been a major adjustment but I am surprisingly getting used to it.  Not sure how will I adjust back to a more normal life style but would sure like to get the chance!

September 30, 2001 - There is definite hope!

After a bit of a tough day yesterday ( felt pretty drained all day but still managed to cook, do laundry and did my full set of PT in the AM), I am feeling great again today.  Friday and today I feel almost like my old self.  Have a decent amount of energy, my mind is clearer than it has been in a long time and I am hopeful!

Heard very good report on another fund raising event (Poker Run at the riding stables) where we raised a down payment for my sauna (will need to continue this treatment when I go home).  

Sue is going to try to sell the house as it would cost too much to retrofit carpeting and it is too much for her to keep up if I am unable to mow lawn (grass reaction) and maintain the pool (loads of harsh chemicals).  Very disappointing to think of selling after only living there one summer but what will be, will be. 

I have been doing lots of research the last couple of days and my head is more clear than it has been in a long time.  Now have gone a full month without needing a blood transfusion.  I will have a CBC on Monday with results on Tuesday.  Read as part of my research that high altitudes can cause high hematocrits - since mine are low and that is what zaps my energy, should i move to a higher altitude?  

Speaking of moving, i am giving serious consideration to relocating to an apartment in a warmer climate.  I am very concerned about going back to cold country with all the illnesses that float around in the winter time in CNY.  Maybe we'll have to maintain two smaller homesteads if we can sell the place on Lawsher Drive (we hardly knew ye).  The research page and the forum contain all my latest speculation and research.

Lunch today is lettuce and artichoke hearts.

October 3, 2001

Felt pretty weak and tired today - Napped most of the afternoon but beginning to feel a bit stronger again.  Now over 30 days since blood but did get platelets on Tuesday (counts were P=10, Hemo=8.3, Hematocrits=24, WBC=2.4, RBC=2.4).  Have been doing lots of research and discoverd a similar disease (actually a Dr. Rea patient has it) called ITP.  Have also been dissecting Dr. Young article and discovered in both places the mention of bacteria and viruses as potential causes of AA.  I had shingles and have been testing positive to bacteria.  Will talk to Dr. Rea about it.  Other patients are going through ALF and IV therapy which I also need to ask about it.  Settling into a routine of grocery shopping at the organic food store ( i do drop by Tom Thumb occasionally for a trip down memory lane), preparing food from scratch and doing dishes like in the old days.  I try to catch the 5:30 news but am having a hard time adjusting to that part of the time change.

October 7,2001 - Checkpoint with Dr. Rea (It's been 7 weeks)

See update of October 8 in Alternative Healing Section 

Good News 

• I feel better than I have in a year
• It's been over a month since my last blood transfusion
• I can breathe, smell and exercise 30 minutes per day
• I am ridding my body of chemical toxins
• I am no longer taking all the toxic meds

Bad News

• I still need platelets every 7-10 days
• I can't make it up a 6 step flight of stairs -Lack of Energy
• Still no clear link from immune system to cell growth (CD34 Glcoprotein?)
• My immune system is still destroying my blood cells
• I am taking more vitamins and supplements than I was meds

October 18 Update - "The Truth - Always the Truth"

I just spent another night in the hospital - My best guess is that I have spent well over two months now in a hospital bed and another two months in a crummy cotton covered piece of plywood all in hopes of finding some way of beating Aplastic Anemia.  Today, I would have to say that AA is winning.  My counts are actually worse than they were when I started and that is after SIX units of blood and FOUR units of platelets. This is not progress!!

After a little over a week since getting both blood and platelets by platelets were at 5000 (the lowest they have ever been!) and a week ago, my other counts were at their lowest ever.  I am angry, discouraged, disappointed but still determined to beat this damn thing.  What I am realizing more than ever is that nobody is going to do it for me. My only hope rests in working with my wife on trying to make something in the whole world of natural healing work while continuing to research and try to find my own cure.

(Copied from Alternative Treatment Page)

In summary, I am pretty disappointed at the moment.  I have spent nearly $20,000 and my counts are no better than when the day I arrived at the Environmental Health Center of Dallas.  I may be impatient, but it would seem to me that after over two months of eating a restrictive diet, getting poked in the arm an average of 15-20 times a day, "depurating" (exercise, sauna,massage), taking God knows how many tests, IV Therapy, Oxygen Therapy and virtually everything they offered, my counts would have improved.  THEY DID NOT!  

Now, if my objective had been to detoxify and "balance my immune system", then I would have to say that it probably worked and may even recommend the place to others, but at least for now, I would have a very hard time recommending it to anyone who has a serious disease like AA.  Most of the people here have allergies or have somehow been exposed to toxins and or chemicals,and more than a few are just whacko.  I needed to get out of here before I became one of them!

So - on to the next attempt.  I will meet with folks in Rochester in the next few weeks and seriously evaluate the cytoxan treatment again. It still scares me but this alternative healing strategy is not getting me anywhere.  What it did accomplish was to rid my body of cyclosporine and all the other crap that conventional treatments were loading it with.  Even my counts are in the tank, I am stronger and can think more clearly than at any time since contracting the illness.  By default, the natural approach still probably has a few weeks to go and I may even give it to the end of the year. "Immunosuppresant Theary" (ATG/Cylco, etc) got six months so we'll give "Immune Balancing" six months and then it's on to "Kill the Marrow and see if my body will Replace It" (Cyclophosphamide).  Great options from a country than can go to the moon but not cure the common cold!  I must say that I am less and less impressed with "modern medicine"!  I already know more about Aplastic Anemia specifically and Autoimmune Diseases in general than every Doctor I have met and I have only been studying it for a few months - and I'm not getting paid over $500/hour to convince people to try the latest treatments that don't even work- Must be I'm in any anger phase!!! 

November 1, 2001 - Disappointment, Despair and Determination

I am discouraged, disappointed and down in the dumps!  It seems like everywhere I turn is bad news.  We are having to sell our house, customers are beginning to bail out and we are spending what is left of our savings on treatments that do not work.  I really don't know where to turn and for the very first time in my life, I feel helpless.  Just when I can garner enough energy to try and right the ship, I spend two or three days in the hospital or with doctors just keeping myself alive.  Nothing appears to be working relative to a lasting cure or treatment.  I am simply borrowing other people's blood cells until they die off and I go back for more.  My body is losing in the battle to create its own cells. Oh, woe is me!  

Now....I am still determined to beat this damn thing and I will not give up.  I am going back on a strict rotational diet, taking all the vitamins prescribed by  Dr. Rea and will do exercise and sauna as long as my body holds up.  I will continue with this protocol while further investigating Cytoxin and/or BMT.  Dr. Lancet is opposed to Cytoxin but promised to talk with Dr. Brodsky or another member of the team who did the Cytoxin study.  I have an appt in November to discuss his findings, plan for a BMT or Cytoxin after the holidays and have another Bone Barrow Biopsy.  That is all the news from Lake Woebegone where all the women are strong, the men are handsome, and all the children are above average.

November 10, 2001 - More Days Forever Lost to Doctor's and Hospital Visit - And a Close Call

A chronicle of the last several days since returning to Syracuse on October 20th:

Friday, Oct 26 - Kirshner appt - Platelet Transfusion 23 Hour Admit - There til late in the evening

Monday, Oct 29 - Kirshner Blood Check - OK wait til Rochester on Thursday

Wednesday, Oct 31 - Sorry Charlie, you need blood NOW (Crits 23.8) Halloween in 23 hr admit

Thursday,  Nov 1st - Day trip to Rochester for mtg with Dr. Lancet and Sharon - Cytoxin not a good idea for me.

Friday, Nov 2nd - Prearranged from Rochester with Kathy K. for early AM platelet infusion - Home Tonight

Saturday, Nov 3rd - An actual day of freedom - cleaned up some junk around the house and out to dinner

Sunday, Nov 4th - Back on the merry go round with a new spin - Got up early, showered and got ready for church then suddenly got severe chills followed by fever up to 103 and spent nearly the whole day fighting it. Sue wanted me to go to ER, I refused and spent the day alternately freezing and roasting in bed.

Monday, Nov 5th - Felt better, showered etc and went to scheduled visit with Dr. K. - WHAM, 8:30 AM Shaking chills so bad could not hold the phone to call Sue.  Transferred via ambulance to CGH.  Spent several hours on the 3rd floor (only room available on short notice) getting stable (on oxygen, IV, tylenol and antibiotics) and then transferred to 469.  Rest of the day getting meds and had another episode that night I think - Had about 5-6 but then kind of ran together after awhile.  This one scared the heck out of me.  I could not control the shakes and almost went into convulsions at least 3 times where I was about to bite my tongue etc. - Lovely experience!  Dr. K says some kind of bacteria (not that big a deal for a normal person, but life threatening for me).  Took cultures from line and arm.  Also a CBC to check blood levels. Another good shaking session for Sue later in the day.  She spends the night with me.

Tuesday, Nov 6th - Early AM severe shaking session. OK lets get to work on this one - Two units of blood, 5 pack of platelets, Vankomyacine, Cephapime and Saline all day and night.  A slave to the IV pole again.  Preliminary results confirm a bacteria but don't know what yet for sure. Check back tomorrow.  Kathy spends the day.  A late afternoon shaking performance for Kathy and Pastor Derrin. Kathy looks worried so that gets me even more concerned cause she sees this stuff all the time. Melissa spends the night.

Wednesday, Nov 7th -  Of course an early morning shake session. Dr. Brody (Infection control changes the antibiotic mix a bit - off the vankomyacine and add something I don't remember) Sharp pain at catheter site - change dressing and do a culture. Melanie and Fred arrive early Thursday AM after driving all night. Oh, oh this is getting serious.  I put on a special matinee performance for them about 2:00 PM.  

Kirshner takes one look about 4:30 and says "This is what we call in medicine, a no brainer - it has to go."  Schedules immediate surgery - Dr. Congelli arrives at about 8:00 PM, a little morphine and lydocaine, and by 8:30 PM,  my old friend Bernie Hickman is history.  Bernie saved me from approximately 500 needle sticks so he was a good friend - So long Bernie.  Back to getting needle sticks from butchers.  One of them bruised my arm reminiscent of the first Rochester experience.  I have a black bruise about 2" by 4" under my left arm from an IV poke! 

Thursday, Nov 8th - Dr K. 10:00 AM "You have septosemia, negative gram rod very serious blood infection that needs to be addressed right away." Stat back on the vanko - Carol actually steals someone else's dose and it is going in to me about 15 minutes after the order is given (normally even a stat takes at least an hour). Dr Brody later confirms that I actually have two seperate bacteria infections and will get more vanko and cephapime.  Watch for another day or two and then go on an oral and go home.  No shakes on Thursday!

Friday, Nov 9th - Released at 10:00 AM with oral SMZ-TMP DS Tabs (Sulfamethoxazole) Known to cause Aplastic Anemia - Now that's interesting!  This one sounds like a real winner, but have to get the bacteria under control or it will kill me.  Nice choices I have.  Speaking of choices:

I am now very concerned about the short duration between transfusions - blood was less than a week and platelets were only 4 days - and they did not respond well at all.  I will likely need either or both again early next week.  The bacteria episode also is making me seriously reconsider the decision to wait for a BMT til after the holidays.  I may not have that long at this rate. I have witnessed via newsgroups how quickly people can be taken by one of these infections and I don't want to go that way.  So - email off to Luci inquiring as to how quickly they could arrange the BMT if I decide to turn up the time table.  Will watch counts this week and probably make an ultimate decision shortly - but to complicate things, We sold our house tonight!  Accepted an offer about 7:00 PM on Friday.  This will at least stop the financial bleeding.  Wish it was easy to stop my bleeding!

November 29, 2001- Cytoxan here I come!

But first, an update on what has been happening since last I updated - We have indeed sold our house and have put in an offer on another smaller house.  Will cut our mortgage payment in half and pay off in 15 vs 30 years.  Overall savings of $400,000!!!  Wow.  Still fighting with the insurance company over the bills in Texas and not even sure how much we owe for all the other stuff.  Will probably try to get to the bottom of that mess this week-end.  

Pretty much normal stuff with Dr. Jeffrey Kirshner and Nurse Klinger.  Platelets weekly, blood bi-weekly and now for the good news - Meeting with Dr. Jeffrey Lancent (Jeff Jr. as I like to  call him) and he had an email discussion with Dr. Brodsky of Cytoxan fame and after learning that Dr. Brodsky has indeed had success with previous ATG failures has decided that we should give Cytoxan a try.  Will also put me on daily iron chelation treatments so I need a Pick Line? installed.  Cytoxan will be scheduled for February after the holidays and house selling and moving is out of the way.  My job is to stay cool and avoid infections til then.  Have been doing a little bit of real work for a customer for a couple of days and it feels good to be "back in the saddle".  So - Cytoxan it is.  

Cytoxan is similar to ATG but completely wipes out the immune system and hopes that my body will repair its own bone marrow problem.  You can read more about it by searching on cytoxan and/or cytoxin on the search page - I spelled it wrong for awhile. Special thanks to Mindy Pember for encouraging me to check out this protocol.  I am hopeful that this will work for me as it has for so many others.

We had a wonderful Thanksgiving dinner at our house and will likely have Christmas in the big house before our downsizing.  Sue and family hosted 30+ and we all ate too much but enjoyed the day.

December 1, 2001

Taking on the Insurance Company.  I anticipated this was going to happen but did not realize how much effort Sue has already put into the battle.  With the  combination of my wife's persistence and my attitude, they are in for a battle.  We have already been in contact with The Patient Advocacy Organization and on their advice will be contacting the State Attorney General's Office. Any further suggestions would be greatly appreciated.

December 9, 2001

We have now assembled about 5 pounds of documentation on the alternative strategy, chemical toxicity, etc.  There is a current copy of our letter and the book list lists most of the docs we referenced. We also received a very good letter from Dr. Rea who described how the therapies should work (I will scan it and get it on the site later today hoepfully) - now I just need to stay on the program and hope it works. Sauna is in town and will be picked up on Monday.  

I must be getting better 'cause Sue told me (in her own special way) "you can pick up and clean a little while I'm away."  One of my goals for the next week is to assemble all of my materials from multiple places and begin the draft of my book.  I have some here, some on various computers, some in journals and lots still in my head. 

I am now on a desferol IV program that requires daily 1-2 hour infusions in an effort to bring down my iron levels. I officially have multiple organ dysfunction and from reading about others' problems, I am sure that the Docs are worried about what comes next (I'm probably too ignorant to realized what is happening and just keep on keepin' on).

Worked out an arrangement with several of our better  customers whereby we will continue to provide service on a different basis given my illness.  Melissa is taking the lead and I will support her as I am able.  Not sure if I mentioned this earlier or not, but I now am the proud owner of a Handicap sticker.  What a joy to park close to entrances but I would gladly give it up to return to my old self - well, maybe not! I also got a speeding ticket the other day when distracted about having to sell our house.  The daily battle continues..... Friday was an all day hospital visit again where I had a nice conversation with John (non Hodgkins Lymphoma) re chemical toxicities and how many people in the baby boomer generation are being impacted by these auto-immune diseases.

Also learned that another CGH patient is now 100 days post BMT and doing well. Way to go Paul!  I now include Ed, John, and Paul as members of my local informal research panel.  They all reside in Syracuse and I pick their brains whenever we meet.  CGH is adding a new, more private, infusion area so I may not be able to bug people as often. But on the positive side, I won't have to put up with others wanting to watch the meaningless drivel on the black box.

Some interesting news from Nurse Klinger, my "Advocate General" - The longer, your body compensates for the lack of oxygen and low counts, the larger your heart muscle gets.  So now I have one more thing to worry about - not that I worry much anyway -  and it just means my heart can be bigger for those around me!

By the way, I got the cleaning done, so now I can play around with the cool new animated gifs sent to me by Vivianne - Thanks Vivianne. 

December 11,2001

Sauna arrived, is uncrated and 3/4 assembled as I write this.  Had to take a break to let the power screwdriver recharge!  I wish these darn tools could keep up with me. After my two hour drill with the desferol IV I went to work and assembled the sauna. It's a big sucker.  Takes up a good portion of the basement and I wonder how it will fit in the new place - yes, in about 1-2 months I will be disassembling, moving and reassembling - now what sense does that make? None, but I just might get lucky and get detoxified in time to avoid the chemo, so it is definitely worth a try. 

Sue fixed a great pot roast with all the trimmings on Sunday and we hosted Jack, Liz, Ted & Addie.  A very nice time.  I treasure the time with my friends and family and look forward to each day I am here.  I am very upbeat these days, feel good and hope it lasts. The insurance company meets today to decide on our case - A positive outcome could really lift our spirits as we are downsizing and selling off assets just to stay afloat. I wonder how others who are less fortunate than we are cope with these issues.  Thankfully Sue can work, Melissa is holding AEBIZ together, I have SS disability and the insurance company has paid for a tremendous amount of the treatments.  I never had any appreciation for these issues until now - hopefully I will be more understanding of others' plights as a result.

It has been very interesting to pass through the various stages of coping with these beast.  Even within a given day, I will go from feeling very upbeat, to being in the dumps, to being angry, to having hope and back to feeling good.  Right now, it feels good to be somewhat normal except for the transfusions and desferol infusions.  I can think, work a little, enjoy the sunshine (it's been incredibly warm in UPSNY this year - as I write this, it is close to 50 degrees and supposed to  hang on for awhile yet) and pretty much lead a normal life.

December 22, 2001 - So this is normal?

My daily routine is now the following:

Awake at 6:00 AM, plug IV in for daily dose of desferol to chelate the blood out of my system (Docs are concerned that my feratin level is too high and will cause organ damage)- Takes about 1.5 hours.  Exercise from 8:00 - 8:30, take my daily dose of abut 15 vitamins, sauna for an hour, wrap my arm so it does not get wet and take a shower and get dressed.  It is now about 10:30 or 11:00 and I can start my day.  Near the end of transfusion cycle, I can't do the exercise and sauna due to lack of strength and energy.  On the good days, I can function normally after 11:00.  On the doctoring days, I go in for blood count checks and/or transfusions.  

For example on Friday I got up at 6:30, cleaned up and was at CGH Home Tonight at 7:30 getting hooked up for blood.  Returned home about 3:30, hooked up for chelation IV and after showering, had my first oppty to be IV free at 5:30 PM.  And my wife asks "Why are you so cranky?"  I reply, "Because dear, I have been hooked to an IV all *7&654%&^*^(&**(*)* day."  So I ask myself "This is normal?"  An here I am at 6:30 on a Saturday morning with my IV safely plugged in getting chelated.  

Alas, Dr. Abud warned me that my life would never be normal again and it has now been almost a year since that prophetic comment.  Sue and I celebrated our 32nd wedding anniversary in the first snowstorm of the season reminiscent of our wedding day.  We went to Inn of the Seasons and had a somewhat disappointing meal but at least we were able to celebrate.  Dr K and Nurse K expressed mild amazement that I was as healthy as I am during last visit.  Last year at this time I was among the walking wounded barely able to get around.  

We went to a customer/company xmas party last night and Mike asked me if I could go on receiving transfusions like this forever.  I guess I could but must be careful about infections, worry about organ damage and face the fact that at the bottom of the cycle I will be pretty useless.  I read about others who have been doing it for many years so I guess if none of the remission/cure strategies work, I will just keep on keepin on and make the best of my new normal status.  

If anyone is interested, I have my draft notes for a book now posted here at http://aplasticcentral.com/book.htm.  It's in very rough condition but I am attempting to consolidate all my notes from various sources.  Hopefully over the next several weeks it will begin to take shape.

I caught the last bit of a news report last night about new stem cell transplant protocol at Hutch not requiring full HLA matching so am off to surf.  Good morning to anyone who reads this. 

January 18, 2002

I'm not sure if I have much of anything new to report, but have not updated my journal since before the holidays so will at least capture some of my feelings at the moment.  The holidays were very nice.  The whole family was together for several days and it was wonderful to be alive.  At this time last year I was not sure if I would see another Christmas.  My original prognosis was 6 months and here I am 12 months later and beginning to think I may have a shot at beating this thing. 

I feel stronger than I have in a long time and am it has been 10 days since my last platelet transfusion.  That's nothing to write home about, but I do feel a bit stronger than usual and have been exercising, taking a sauna and working almost every day.  I have managed to put in 2-3 full work days a week for the last 2-3 weeks and have not hit the exhaustion wall in quite awhile.  I'm even daring to think a little longer range than next month again. Need to get the house move and the cytoxan thing behind me and then can hopefully thing about being normal again.  I am certainly concerned about the effects of the chemo as I know it will knock me for a loop (hair loss, vomiting, weakness, etc. etc.) but others have faced it and I can too.  I am probably in better physical shape than I have been in the last two years so that should definitely improve my odds. 

Sue, family and friends continue to be patient and supportive with all my mood swings and days of exhaustion.  The exhaustion usually comes about 12-14 days after blood transfusion but I am learning to really take it easy on myself when that time approaches.  Immediately after the transfusions I am strong and full of energy.  

I am really gratified by the number of people who have written saying how much they are getting from the web site.  I receive at least 1-2 notes every week and the traffic is now at about 300 visits per day.  I have worked hard to re-organize all the stuff and will likely go into research mode again soon.  I want to find out more specifics about stem cell research and therapeutic cloning as I think they both can potentially have a major impact on our disease. The obvious question becomes can they do anything in time to help those of us who are transfusion dependent?

Bye for now - It's 1:00 in the morning and I just won $40 playing poker. 

February 11, 2002 - Another Line Bites the Dust

Yes, now my PICC Line has become dysfunctional.  It essentially pulled out and needs to be removed.  I will be getting a new Hohn Catheter on Monday.  That is what they were planning for my Cytoxan so it's no big deal.  

Beyond that, we have successfully moved into a new smaller house thanks to the extraordinary effort of family and friends.  We are about 75% settled and to our surprise everything from the old bigger place fits in the new place.

Counts and transfusions are pretty much the same as always.  I guess I am learning how to pace myself around the transfusion times as I seem to have good energy for about 12 days until I start to crash.  Beyond the inconvenience of 3 hours of desferol and 1 hour of exercise/sauna every day,  I have become accustomed to my new lifestyle.  Certainly am no longer an "A" type.  Probably about a C- but it beats the alternative. 

February 12, 2002 - More on the Hohn and other catheter experiences

I have now been the proud recipient of three types of cathethers so I can speak from practical experience and hopefully warn some of you about pluses/minuses and dos and don'ts - 

So here is my monologue on the insertion, care of and dangers associated with IV chatheters. Start by reading the link below:

http://eduserv.hscer.washington.edu/pharmacy/pharm560/6thweek/ivcath.pdf

My first experience was with the Hickman Long Term Triple Lumen Tunneled Catheter - Hickman was the guy's name who invented this little gem and triple lumen refers to the number of tubes ultimately available for plugging in to. A lot like plumbing - Hot, Cold and Warm with seperate "faucets" for each.

This was installed via a surgical procedure in February of 2001 and lasted for about 8 months before becoming infected. This is by far the most painful and invasive but it did last me a long time and helped avoid numerous butchered IV insertions. (My arms had become black and blue from all the needle pokes.) 

They begin by providing local anesthetic (lydocaine) and then make two relatively small cuts (one in your neck just above the collar bone and the other in your chest. They then "fish" a wire down through your vein and directly into the left atrium of your heart. 

This is not as scary as it sounds, but I would have appreciated knowing what to expect before the procedure. They then follow the wire with the plastic tubing which becomes the permanent IV tube. Finally they "tunnel" down from the insertion point in your neck to a permanent mounting place on your chest, attach the claves (little blue connectors which provide a heparin lock to prevent leakage and little plastic clamps which are a further safeguard.) 

The whole procedure took about an hour from start to finish and if I were to have this done again, I would opt for "real" anesthesia rather than the local. It was not a pleasant experience. I had some rather annoying pain for a couple of days afterwards and then it became like an old friend. 

I "flushed the ports" on a daily basis with the 10 cc's of saline. This procedure keeps the lines "patent" or able to draw back and forth. I also had to change the tagaderm (clear vinyl patch) dressing on a regular basis. After several months, the stitching used to secure the catheter to my chest became very irritable and ultimately became so infected that I landed in the hospital with a sepsis (blood) infection that caused rigors (shaking), severe chills and a fever of over 105 degrees. 

This was definitely no fun and landed me in the hospital for about a week. As a result, my Hickmans was removed (had to also be done by a surgeon but was less painful then the insertion and was done in my room rather than in a surgical area.)

I then had a Peripherally Inserted Central Catheter (PICC) installed in the fleshy part of my left arm just below the elbow. This was by far the least painful but also the most useless device. If they suggest a PICC, run the other direction. Mine only lasted about two months, was constantly in the way and ultimately pulled completely out.

In fairness to the PICC, my "statlock" got wet shortly after the insertion and none of the people who looked at the line knew enough to replace the statlock (a very sticky butterfly type bandage that locks the line in place on your arm) I subsequently learned (while having my Hohn installed) that immediate replacement of the statlock may have prevented the line from pulling out.

My latest experience is with a "semi-permanent" device called a Hohn Catheter (again name dfor the inventor). Hohn gets a B+ so far. The procedure was performed by a radiologist and was similar to the Hickman experience but less painful. It only requires the top insertion point near the collar bone and does not normally require suturing. (The doctor made the decision at the end depending on how well the insertion went). In may case, they decided the statlock would suffice. 

I have virtually no experience with this device yet, and except for the fact that it is more exposed than the other two (looks like a Frankenstein insertion device hanging out of my neck) I think I will probably like this one the best.

Closing comments - be very careful in the first few days to not get the "site" (insertion point) wet and then try to keep it covered with saran wrap or a "baggie" when you shower. Moisture under the bandage is bad news!