Better today

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

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

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