My Stem Cell Journey

HAPPY NEW YEAR !!!!

2008-12-31T17:34:00.002-05:00

To all my friends who have read and sent messages to my CarePage I thank you for your continued support.

Physical Therapy is going well and I am getting stronger each day. But boy am I tired the day after. Each day Kim (my PT) has me do more. She is just great.

Since I was turned down for the stem cell transplant and there is no program other than Chicago I am now looking into a lung transplant. I have met with one of the doctors here in NJ and will be meeting with the surgeon next week. We are hoping and praying that they will accept me in the transplant program. I must be very physically strong in order to have the transplant. I am working hard toward that goal.

Please keep me in your prayers and have a Healthy and Happy New Year!

Love and Hugs, Michele

Posted: December 21, 2008

2008-12-28T15:10:00.001-05:00

Hi Everyone, We have snow and is it beauitful. It may last until Christmas and we will have a "white Christmas"!!!!

I have had two session of rehab and it is good. The day after I am just exhausted and can hardly walk. The leg machine really does me in. But it will be better as I gain strength in my legs.

I lost my cat "Sophie" last week. She was 18 1/2 years old. She had a good long life but we miss her so much. Our new Anabelle is still "Queen" and gives us such pleasure and laughs with all her antics.

Gary and I wish you all a wondrful Holiday Season, a Merry Christmas and/or a Happy Hanukah and most of all a safe, healthy and HAPPY NEW YEAR!!!!

Pulmonary Rehab.

2008-12-12T11:02:00.001-05:00

I am scheduled to start Pulmonary Rehab. next Tuesday. Hopefully this will give me more strength and help with my stamina and walking. I will be going twice a week. Unfortnately it is 9:00 am and I don't get going that early in the morning. I went to the eye doctor this afternoon to see about a cateract in my right eye, caused by predinsone. I will probably have it removed early January. I am having a hard time reading the "take-out" menues.

Gary cooked Thanksgiving Dinner and did a wonderful job. I sat in the kitchen and gave instrctions. His Mom and Dad and brother Bob were here and we all were very impressed. Bob brought the pies. Bob will be here again Sunday and then he goes home to North Carolina until he ships out to the middle east for his 4th tour. Please keep him in your prayers!

Christmas is coming and I hope you all are prepared.

Love and Hugs, Michele

Pain in the neck!!

2008-11-21T16:04:00.002-05:00

I have been having severe pain in my neck and shoulders. We went to the orthopedic doctor yesterday and they took x-rays. I have arthritis in my neck and the 4th 5th and 6th vertebra are basically fused. There is not much that can be done except heat, light massage to relieve the spasms and then cold. I have to be careful taking Advil because I am on so much predisone. Hopefully when the spasms subside I will feel better. It is really exhausting with this pain. Other than that all is well here.

Visit from Bob

2008-11-21T16:02:00.001-05:00

Gary's brother Bob is here again to help clear out our storage unit, garage and basement. He has been such a big help. Bob is stationed at Ft. Dix and will probably be going back for his 4th tour to the Bagdad, Afganistan etc. in February. I just love having him visit and it is so good for Gary. This afternoon we will go to their parents for our regular Sunday visit.

I am doing well and getting stronger. I started to reduce the prednisone to 20/30 mg alternating days, on Monday. So far so good. Yeh!

We will be doing Thanksgiving Dinner here. Now that I can get up to the kitchen I will be able to do some of the preperation and Gary will be stuffing the turkey and all the rest. His parents and his brother Bob will be joining us. I can't wait to start cooking again.

Happy Turkey Day!!

Feeling good

2008-11-11T14:18:00.002-05:00

Hi Everyone. I am feeling pretty good and stronger. Did a lot of thngs this weekend. Sunday we went shopping for a coat to go around my "pumpkin" prednisone belly. Actually was in a department store for the first time in a long time. Yesterday we drove out to western NJ to the farm where Gary hunts to get his permit and then we had lunch at our favorite Mexican Cafe. Boy was that good! I got a good workout gettng up an down and walking. Shortly I will be starting Pulmonary Rehab which will help with the walking and increase my stamina.

And now a story about Anabelle. I believe I mentioned that she hunts in the house and brings socks down to the family room. The other day she brought my wool hat I wear for skiing and a tee shirt. The the best was this. We were going out and I asked Gary to find my pink "Life Is Good" hat. He could not find it so I wore one of his. That evenng while we were watchng TV I noticed something on the floor. When I turned on the light there was my pink "Life Is Good" hat. Anabelle had found it and brough it to me. Spookie!

Enjoy the beauitful weather. Love and Hugs, Michele

My Daughter

2008-11-04T06:59:00.002-05:00

Another month has gone by and here is some news.

My daughter, Michele Dery, went to the Sarah Palin rally in Erie PA last week. There were 7,000 to 8,000 perple there supporting McCain/Palin for President. She said it was "great". She was able to get Gov. Palin's autograph and shake her hand and her husbands hand. Monday Michele will be manning the phones at the Erie PA Republican headquaters for 3 hours. "Go Michele" and "Go McCain and Palin!!!!!"

As for me I am still on 30 mg of prednison and feel in very good and strong. Went to the eye doctor yesterday and walked up the steps(8) to his office. The legs are getting stronger. Yeh. I will be upstairs this weekend to get that long awaited shower.

Hope you are all well. Love and Hugs, Michele

Send a message

News from Michele

2008-10-06T16:05:00.004-04:00

Hi Everyone,

I cannot believe it has been a month since I updated my Blog.

I had a PFT at the pulmonologist and the difusion number has decreased by about 50%. I guess that is why I am still on 6 liters.

I have had a lot of company resently (Yea!!) Two classmates came to visit for the afternoon, and then Gary's brother came to stay for the weekend. It is such fun to have Bob visit. He left on Sunday and my friend from Delaware visited on Monday afternoon. My daughter, Mchele and her husband, Rob, arrived Tuesday. They were here for a week and it was just great having them vsit.

With all this company I did not get my naps so it took a few days to catch up. I was real tired.

Last Wednesday I had an infusion of Reclast for ostoporosis. It is done once a year so no weekly or monthly pill. The high dose of prednisone is very bad for the bones.

That is all the news for now. I keep on plugging away, hoping for a miracle!!!!

Love and Hugs to you all, Michele

Test results

2008-09-04T15:37:00.002-04:00

Saw the pulmonologist yesterday and got the results of the right heart cath. The pressures have not changed. I guess that is good, not worse but not better either. Could take longer to see results. Since I do not have a stem cell program to go into, it does not matter anyway. Most days I feel pretty good. I am still walking every night when it is cool.

Sunday was a "red letter day". I went in the Hot Tub with Gary. Was that wonderful!!!!! We will do it again this weekend as long as hurricane Hanna does not give us rain. I was SO happy to do something special, it made me feel alive and a litle normal.

I want to thank everyone who has sent encouraging messages to me over the past year. They are greatly appreciated and help keep up my spirits.
I LOVE YOU ALL, MICHELE

Feeling Good

2008-08-24T13:03:00.000-04:00

Hi Friends, Well the last few days I have been feeling good. Walking is easier and Gary said I am walking faster. I am still on 20/30 prednisone alternating days. We will stay that way for a while longer before we drop to 20 mg a day. If I can put together a week or more of all good days with the oxygination numbers good then we may try and reduce the prednisone.

Next Wednesday 8/27 I will have the right heart cath. to see if my Pulmonary Artery Pressure (PAH) has gone down with the new medication, Revatio. I will let you all know the results.

Enjoy the last week of summer. It is hot here today. Love to all, Michele

Getting stronger

2008-08-13T15:47:00.001-04:00

Hi Everyone, I extended my walk last night by 120 feet and did very well. I do the walk in sections resting in between. Still on 20/30 (alternating days)prednisone and 6 liters of oxygen. Hoping soon I will be able to reduce both. My next PFT is scheduled for 8/20 with the pulmonlogist. Other than that every day is the same. What a beauitful August. Anabelle is growing so fast but is still a mischevious little kitten. She rules and keeps the "boys" (cats) under her control. She loves to give kisses and sometime wakes me up at night to give me a kiss.
Have a wonderful day, Hugs, Michele

Sanskrit Proverb

2008-07-30T17:09:00.001-04:00

"Sanskrit Proverb"

Look to this day,
For it is life,
The very life of life,
In its brief course lies all
The realities and verities of existence,
The bliss of growth,
The splendor of action,
The glory of power.
For yesterday is but a dream,
And tomorrow is only a vision.
But today well lived,
Makes every yesterday
A dream of happiness
And every tomorrow
A vision of hope.
Look well, therefore,
To this day.

Busy few days

2008-07-30T17:06:00.001-04:00

It has been a busy few days with visitors. YEA! Joan came over on Saturday with a copy of "Mama Mia". What a Hoot. We had such a good time as we always do. Gary parents vsited on Sunday and had to stay until almost 4:00 pm because of the thunder storms. Monday Bobbi who now lives in Deleware was up to see the dentist. She always comes to see me when she is here. Today was a visit to the pulmonologist and he is very pleased. I am still on 20/30 mg prednisone alternating days for another 2 weeks. He did say to reduce the oxygen to 5 liters, as long as I stay in the low 90's it will be OK. I walked from his waiting room to the examining room which was the last one down the hall and then back to check out. It was my longest walk yet!!!! I will do my walk outside tonight if I am not to tired. Love to all, Michele

Hot summer day update

2008-07-18T15:09:00.000-04:00

Hi All,
The ribs are much better now. So the healing is progressing. I have decreased the predisone to 20mg/30mg alternating days. This will continue for 2 weeks and then I will, baring no complications, go to 20mg a day for at least 2 weeks. The reduction in the predisone at this point must be VERY slow so I do not relaps with more inflimation. The dotors are pleased with my progress. No word on UMass but I am seeing the transplant doctor coordinator on Monday so he, Dr. Friedman, may have some news. I have been walking for longer distances outside and my legs are much stronger. I am anxious to start doing steps so I can go to the kitchen.

Anabelle is growing so fast and is a bundle of energy. Gary, of course, is exhasuted taking care of me, working and his parents. But we just plug along.

Hope you are all enjoying your summer. HOT! Michele

Anabelle

2008-07-08T16:36:00.002-04:00

Well everone at long last, and I know you were waiting for this, here is a picture of Anabelle sitting on my lap.

I am doing fine and walking more. Ribs are better. More news alter I see the rheumatologist on Friday. Michele

Fractured ribs

2008-07-03T14:09:00.005-04:00

Hi everyone.

I have been having pain in my left side for about a week. Yesterday at the Pulmonologist I had the ribs x-rayed. I have 3 non-displaced fractured ribs, 7,8,9. I can take pain medication and use the Lidoderm patch which both help. The good news is they they were NON-displaced. Because of all the prednisone I have taken the bones are very fragile and can break if I move the wrong way. Otherwise all is going along well but slowly.

Anabelle has grown so much and is such a lover. Gary installed an in the wall ironing board over the weekend. It is neet and out of the way.

An update on Lisa. She is improving every day and they are working on getting her off the trac. and feeding tube. Her family and friends thank you for your prayers.

HAPPY 4TH OF JULY.

Not about me

2008-06-19T06:19:00.004-04:00

This is not an update about me but about our dear friend and transplanlt patient Lisa Volz. I called Northwestern Prentice Women's Hopital yesterday to find out the condition of Lisa. I spoke to her nurse Kristin who was more than helpful. She has been taking care of Lisa for a while. Lisa is off the ventilator and her eyes are open but she is not responsive. The nurse said if she told her I called she would not understand. I kmow we are all very saddened by this situation and can only hope and pray that Lisa recovers to the happy vibrent young lady we have come to know Hoping also she will be able to continue her wonderful art. Please pray for Lisa. When I was on the ventilator twice I know many people were there for me and I woke up due to their prayers and good thoughts. Do this for Lisa, please. We want to see her smiling face again on her Blog. Love to all, Michele

Makimg progress

2008-06-13T21:21:00.000-04:00

We went to the Rehumotologist today. He said the lungs sounded good and tomorrow I will go to 30 mg prednisone. He is more concerned about getting me down on the prednisone than staying on 6 liters. I do not have to go back for 1 month. The cytoxan seems to be keeping everything in control. I walked from the car up the steps to his office and then from the office down the 4 steps to the car. I was tired, but I did it!!

Anabelle went to the vet today to get a distemper shot. She was sleeping a lot this afternoon. She has gained 1.2 lbs total weight 2.9 lbs.

A Good Day

2008-06-06T23:22:00.000-04:00

Went to the pulmonologist this morning said the lungs sound good and we will start on 30 mg prednisone in another week. This evening I walked with the walker out to the back yard while Gary watered the hanging baskets and filled the bird feeder. The feeder is constanly full of birds. We will have to get more seed tomorrow. 2 bunnies were also in the yard. I decided no more wheelchair, I will walk as much and as far I can. Have a good weekend, it will be HOT here in NJ. Michele

Visit from friends

2008-06-03T21:41:00.001-04:00

Last Friday I had a visit from 3 of the ladies I worked with at the law firm, Jeanette, Maryann and Genny. It was so good to see them and catch up on all the gossip and news.

I am now on 40 mg prednisone and doing fine. Sunday I triped and fell on my knees. We were afraid I had broken something since it hurts to put weight on the leg. Had an xray today and everything looks OK. Just an Ace bandage to give it support.

We are enjoying Anabelle so much, she keeps us busy and laughing with her antics. The boys, (cats) have been very good with her and she chases them around all the time. My Sophie just ignors her. So it is one happy family.

Gary keeps buying me hanging baskets to hang on the purgula over the hot tub, they are beauitful. Hope some day I can get back in the hot tub.

More later, Michele

A beauitful day in NJ

2008-05-25T22:25:00.002-04:00

Just to let you all know I am feeling better every day. My dear friend Joan came over to visit this afternoon. We sat out on my front porch and watched Gary cut the lawn. It was just a beauitful day. Joan made meat balls and sauce for me. Can't wait to have some pasta with home made sauce. I so miss cooking.

Gary hung hanging baskets of flowers out over the hot tub. They are just beauitful and I can see them from inside the family room.

Our new little kitten, Anabelle, is such a pleasure. Full of energy but a lover.

I will be on the 50 mg prednisone for another week and if all goes well will drop to 40 mg. So far I am doing well on the 50 mg. The pulmonologist wants me off but we have to go very slowly.

Happy Memorial Day to all and support our fighting men and women where ever they are. Pray for them to come home safe and sound.

Short trip to the hospital

2008-05-19T09:33:00.002-04:00

Tuesday I woke up with a very sore elbow. I know it sounds strange but being on the computer so much I lean on my right elbow and developed an ulcer. Boy, did it get angry and infected. So I spent 2 days in the hospital on IV antibiotics and home Thursday evening. The elbow is much better and I just have to take the pills for 14 days. Lucky again. I am feeling much stronger and am able to stand and walk for longer periods of time. Prednisone again has been reduced to 50 mg.

We have a new addition to our family. On Friday Gary picked up our new "little" kitten, who we named Anabelle "easy to love". She is so tiny and only about 7/8weeks old. But such a lover. She along with my cat Sophie (18 yrs) will keep me company during the day. Pictues to come soon.

Mother's Day update

2008-05-12T13:39:00.002-04:00

Hope you all had a Happy Mother's Day.

Just a little news about me. I have stayed on the 60 mg prednisone until I see the pulmonologist on Wednesday. I think I am better but not ready to go to 5 liters yet.

The great news is that my daughter, Michele Dery Hanes, is coming to visit from Erie, PA. She arrives tomorrow afternoon. Michele will be graduating from Bexley Hall Episcopal Seminary on Saturday at Christ Church in Rochester, NY and will receive a Masters of Divinity. She has worked very hard for the past 3 years traveing from Erie to Rochester every week for classes in addition to field work at a church in Mayville, NY during the week. We are so proud of her!! Send your blessings on her special day. Thank you. Wish I could be there.

Update to the saga of my stem cell transplant!

2008-05-03T14:05:00.001-04:00

Well after that last encouraging news the doctor in Chicago called my rheumatoloist back and they talked for a long time, going over my file. The doctor said he just could not do the procedure based upon my history. So we are back to square one again.

We have increased my cytoxan to 150 mg a day and also increased the prednisone to 60mg a day. I was having oxygination problems and we are not sure if it is inflamation in the lungs or too much fluid. I am also on lasik, so you know what that means, I visit the bathroom a lot. But, the fluid is down and I feel much better. We will decrease the prednisone every 5 days to get back to 30mg a day. Hoping that the increase in the Cytoxan will prevent inflamaton in the lungs and we can continue to decrease the prednisone.

Other than that all is the same. I just keep plugging away and hoping we will find a study that will do the transplant.

I just keep smiling and never give up.

Some encouraging news

2008-04-26T13:18:00.002-04:00

I have some encouraging news. My Rheumatologist spoke with Dr. Richard Burt at Northwestern Medical a few weeks ago. They went over my case and some of my numbers. Dr. Burt said "my head says "NO" but my heart says "YES". Yesterday my husband, Gary, received a call from my transplant coordinator, Dr. Friedman, who spoke to Dr. Burt also about my progress etc. He got a positive response from Dr. Burt and Dr. Burt did not say "NO". The plan is to get another right heart cath in June and hopefully the number will be lower. Dr. Friedman has also submitted the paperwork to Cornell Med Ctr. in NYC for a transplant program. Dr. Burt told him he would help him with the process. Dr. Friedman was optomistic!! and so are we.

Gary is outside working on the lawn again today. He went Home Depot to get seed he bought me hotdogs! (junk food) Oh boy were they good!! The sun is shining and I hope to get out later when it warms up a little. Yesterday afternoon I climbed up the steps to the porch and sat out while Gary worked on the lawn. It was so great to be on our porch and outside.

I will keep you posted. Michele

Eye exam on a beauitful day

2008-04-12T16:34:00.003-04:00

Well I finally got to the eye doctor to have my eyes checked. Need new reading glasses. It was a project as Michael Falcone, my eye doctor does not have handicaped access so Gary and Michael had to lift my chair up the stairs. I am able to walk down though. I ordered new frames so I will be just smashing. It was a beauitful day, 70 degrees and good to get out of the house. Spring may be my favorite, season with all the beauitful flowers and flowering trees.

I have been feeling pretty good the past few days. The only problem is my feet are swelling so I am trying to keep them up. The doctor wants me to walk as much as possible even if I get short of breath. This is to strengthen the leg muscles. I also have to do arm excerises to strengthen the shoulder muscles. These will help with the shortness of breath, when the muscles get stronger it will not take so much effort to move.

Gary is busy working on a project in my office area. He is in and out the side door and the fresh air is great. The sun is shining and it is another beauitful day!!

Well anyway, that is all for now. Michele

Will Spring ever come?

2008-04-07T11:32:00.002-04:00

We are having another cool day for April again and tomorrow it may be even colder. The Forsythia is in bloom and the Daffodils are out. I love the Spring flowering trees and flowers.

Not much has changed with me. I am now continuously on 5 liters and trying to walk around more to strengthen my legs. I went down to 40 mg prednisone per day yesterday. The plan is to stay there for 2 weeks and then down to 30 mg/day. As long as the breathing continues to improve we will lower the prednisone. After 30/mg day the decrease will be much slower. The lower the prednsione the stronger I will get. I am staying very optimistic but I have my good and bad days. Next week I will meet with the transplant doctor here in NJ and hopefully he will have some good news.

Enjoy the Spring. Love, Michele

Easter Sunday

2008-03-23T18:07:00.003-04:00

I hope you all had a Happy Easter.

Today is a good day and I am feeling better, but most days I am very tired, no energy. Yesterday we reduced the oxygen to 5 liters while resting and sleeping. I maintained 95/96 during the night. Also the prednisone was lowered to 50 mg a day. I am making progress. Next week will be busy with doctor appointments and physical therapy. Yesterday I went to "Phil" my hairdresser of over 30 years. My hair has come in curley since I have been on the Cytoxan. So I had it colored and cut, quite short. Gary likes it but I wish it was straight like in my pictures.

Gary just got back from visiting his parents so I will say goodby.

Think of Spring as a new beginning to life.

Hugs, Michele

I feel GOOD today!!

2008-03-18T17:23:00.002-04:00

I feel good today, actually the best I have felt in a long time. I was up early as usual taking medication at 6:00 am. Watched a little news on TV and then to sleep until 7:40 am. Went to the computer and then ate my cereal. Gary leaves me milk and juice when he leaves at 5:50 am. A little more TV and another 1/2 hr nap. Back on the computer for a while, lunch with Gary and then physical therapy with Ramone at 2:30 pm. He added 3 new exercises to strengthen my stomach and back muscles.

I heard from Dr. Lowry at UMass and he is going to collabrate with Dr. Traynor doing stem cell transplants but timing is not known. I will stay on top of it and confer with Dr. Friedman in a few days.

Tomorrow I go to the Rheumatologst and hope we can reduce the prednisone to 40 mg a day by the end of the week.

That's my feel good day, Michele

I am Grateful for a Beauitful Day

2008-03-09T18:37:00.003-04:00

Today was a beauiful day, the sun was out and the sky very blue and I am so Grateful to be able to be out. Gary and I drove out to Whitehouse Station in western NJ where all the farms are. We had to pick up some venison at the butcher. We were hoping to have lunch there but the Inn was closed today. We drove through the country side over brooks and through the woods to the farm where he hunts. I had not been there for a long time. We road our dirt bikes throught the farm a few years ago. What a wonderful experience. We picked up some lunch and came home. It was a wonderful day as I don't get out very often only to go to the doctor. Today I feel energized, it must have been the outing. Thank you Gary for this day.
More to come, Michele

Good and sad news

2008-03-06T21:26:00.003-05:00

We lost Scarlet last week and I miss her so much. But she is in Kitty heaven with all her sisters watching out for me.

The Rheumatologist is lowering the prednisone today. (60 mg) Said my lungs sound better to him. We have spoken with a transplant doctor here locally and there are other options for a stem cell transplant. That is GOOD news. We are working on that and I am trying to get stronger. Hopefully I will be able to lower the oxygen level soon which will be a good sign.

Better today

2008-02-23T17:59:00.003-05:00

I am feeling better today. Started the Revatio and hopefully it will make a difference in the PAH. I am home and we survived the snow storm.

Scarlet is not doing well with her kidney problem and Samatha seems to be holding her own. Samantha was diagnosed with Lyphoma last week. It has been a very difficult week for Gary and me.

Hoping for better news soon. Michele

Update from Northwestern Memorial Hospital

2008-02-20T11:54:00.004-05:00

Well I heard from Dr. Richard Burt last week and the news is not what I was hoping for. He will NOT do the transplant for me because my pulmonary artery pressure is not >40. When I had the right heart catheterization done it was 50. His criteria for the study is >40 and he is not willing to waive that number, even though he did waive the age criteria of 60. I guess I will never really know the real reason but needless to say he will not do the transplant. I am going on Revatio which is a medication for pulmonary hypertension to help lower the pressure. There is a transplant doctor here in NJ who will be helping us find someone else who may do the transplant. Dr. Traynor who I started with in Maine in September is now back in Maine at Central Maine Medical Center. We will also contact her to see if she is going to contine the transplant program and if she will again accept me. I am not giving up and we will keep searching for a solution. Right now the breathing is not good and I have had to increase the oxygen to 6 liters. We are off the Dr. Donnabella (pulmonogist) this afternoon and I probably will be put in the hospital. I just keep plugging along and do what ever it takes.

And on another note: Samantha our little pure bread cat has a tumor on her back and was at the Vet today for a sonogram to see if there is also something in her abdomin. We won't have the report until tomorrow. She is a beauty with a little pug nose. An American Short Hair, Brown patch and white. Sophie who is 18 is doing well and Scarlet also. These are "my girls". Gary has Gabriel, Indy and Devlin, his "boys".

I will sign off for now and will and keep you posted when I can. You can also go to CarePages for updates. Under "michelemarronCarePage" or Scleroderma.

Bump in the road

2008-02-07T18:57:00.000-05:00

Well just a little bump in the road. I developed a cold/sinus infection which turned out to be MERSA. The ID doctor has put me on Zyvox for 10 days. We have used this antibiotic before on the MERSA and it was very successful. I also had a chest X-rary and no change. The good news is that it will not delay the right heart catheterization scheduled for February 13th. I am feeling a little better today, more energy and the breathing is better.

Gary is exhausted as his day starts at 4:30am. He not only is taking care of me but two of our cats, Sophie and Scarlet also have health issues. Sophie has an overactive thyroid and gets a pill twice a day. She is real good. Gary has trained her to take the pill from her dish with a little food. "Take you pill Sophie" and she does. Scarlet has a kidney issue and has to get IV fluid under her pelt every day. Gary also hand feeds her and gives them both plenty of love. Thank you Gary.

Barring no other "bumps" will give you all the results of the test next Wednesday.

Think Positive, that the number is under 40!! Thanks, Michele

Test scheduled

2008-01-30T18:52:00.000-05:00

Hi everyone, I went to the cardiologist today and the "right heart catheterization" test has been scheduled for February 13th at 1:30 pm at Overlook Hospital, Summit, NJ. He will have the results immediately after the test and I will be sending them to Dr. Burt, at Northwestern Memorial Hospital for review. My hope is that the number will be acceptable and I will be off to Chicago for the transplant very soon. Thanks for all those positive thoughts and prayers. Michele

News from Northwestern Medical Center

2008-01-25T12:57:00.000-05:00

Finally, I heard from Kristin, Dr. Burt's nurse, this morning. I have to have a "right heart catherization" to determine the pulmonary artery pressure. If that number is acceptable Dr. Burt will proceed with the transplant.
Thanks for all you prayers. Michele

Home from Chicago

2008-01-21T14:27:00.001-05:00

As you know we were in Chicago the past five day having tests at Northwestern Memorial Hospital in preparation for the evaluation for their stem cell transplant program. We met with Dr. Richard Burt on Friday afternoon. He now has to review all the tests and blood tests and decide if I qualify for the transplant. There are 2 more blood tests that are not in yet so I may not know anything until Wednesday. The waiting is very stressful.

Unfortunately it was so very cold in Chicago that we were not able to get out much. Gary really wanted to take me around and show me where he went to school, studied etc. when he lived there. My brother, Peter, who lives outside of Chicago came in on Saturday for lunch. That was a treat. Thursday we had the pleasure of meeting with a wonderful woman named Nancy Baldwin. Nancy had her stem cell transplant at Northwestern almost 3 years ago. She is doing and looking great and has been so helpful in this process. She is a great inspiration and I know she will be with me all the way. Thank you Nancy.

My daughter, Michele Dery calls every day to check on me. She lives in Erie, PA, its cold there too and lots of snow. Michele will start her last semester of divinity school at Bexley Hall in Rochester, NY the end of January. Graduation is May 17th 2008.

More to come. Michele

First Posting on my Blog

2008-01-14T15:14:00.000-05:00

The BLOG seems like the way to go now a days. So now I start just 2 day before I go to Northwestern Memorial Hospital for my evaluation for the stem cell transplant. As some of you may know I have been through this before at MaineGeneral Medical Center in Augusta, Maine. Now I am starting over and my hope and prayers are that this time the transplant will be completed and I will be on my way to recovery and remission soon.

THIS IS MY STORY

Hello everyone. My name is Michele Marron-Meyerhoff and I was diagnosed with Scleroderma in 1990. I have lived a very full life until January 2006. Prior to January I was an avid skier, skiing in New York State, Vermont and Maine. I also skied out west in Utah, Colorado, Wyoming, Nevada and California. My husband Gary and I also road biked, mountain biked, rollerbladed and I went to the gym on a regular basis. In January 2006 I was taken ill and spent 2 months in the hospital, 19 days on a ventelator. Again in May 2006 I was hospitalized and spent another 2 months and on a ventilator again for 17 day. I was hospitalized 2 more times in 2006. I was home from December 15, 2006 until this October 2007 when I was in the hospital for a week and again in December/January 2008. Christmas and New Years in the hospital is not much fun. I have been on chemo, Cytoxan and Predisone in addition to many other medications. The stem cell transplant, using stem cells from MY OWN BLOOD is the only current treatment. This procedure has been very successful for lupus and other autoimune diseased. It is in trial for Scleroderma at this time, therefore, my insurance company is not willing to pay for this life saving procedure. I am using NFT, National Foundation for Transplants, to help with my fund raising. Go to http://www.transplants.org/, go to "patients we help" and put in my name "marron" you can see my page. I am on oxygen 24/7. My lungs are continuing to get worse. This procedure has been performed on approximately 20+ Scleroderma patients with successful results. The patients are no longer on oxygen. They no longer have the autoimune disease and are living full lives again. This is my wish to be able to have a life when I can ski and bike again with my husband, Gary. Gary has been with me every step of the way and I know I am here because of his devotion to me. I love you Gary.

More to come. Michele