Patsy's Guestbook

Ana Brusso  Deena my hvs godchild, so proud of your good heart. I too think of Patsy a lot and her son Andrew. Let’s continue to pray for their comfort and acceptance of their circumstances. Blessings 🙏❤️✝️

Greg Lewis  Praying for Patsy. I sure hope she has just been busy, and her health is alright. Haven't seen her on my Instagram for a long time, either.

Ana Brusso  Me too Patsy. We don’t forget you and Andrew. Praying always for you both. Thank you Deena, my hvs godchild. 🙏❤️

Susan Lynn  Patsy - I was thinking of you and Andrew on Thursday. I'm sure every day is difficult, but holidays are especially hard. Know that we're always here with a receptive ear and a virtual hug if you need us.

Richard Munson  I second that message of love to the cake lady and her son. My prayer is that you both find the strength to weather the storm.

DeLois Tweedy  Patsy, lifting up you and Andrew in prayer.  Praying God will give you peace and strengthen you anew each day. Rest in Him for comfort during this time of need. 🙏❤

Grace Mason   Thinking of you Patsy and Andrew. Sending my love, hugs and prayers for healing and peace ❤️❤️🙏🙏

Patsy Stewart  Hi, Ruth!! I haven’t been on here in awhile. I’ve actually had a lot going on….and a lot coming up. I had the cardioMems procedure a couple of weeks ago. It’s been total chaos. I’m swollen like a toad frog and they can’t seem to get my medicine right. About half of my leg from my groin to below my knee is purple and red. Pretty scary looking. I was down already, but the procedure really took me further down. I saw a new cardiologist at Washington University/Barnes on Wednesday. She is trying to get me in a research group, referred me to a thoracic surgeon and ordered some tests. I go back September 11 & 12. They have postponed my thoracenthesis until after a CT scan on August 31 so they can compare it to the one I had the end of May. I’m having a horrible time getting my breath. Andrew has offered several times to take me to the ER today, and I keep declining. He’s not wanting to take a midnight trip. I have a lot of tests and doctor’s appointments scheduled for the next 2 months. It’s hard to keep up. It’s a busy time for Andrew and his business. He’s been to NY a couple of times. Headed to Ireland in September and then to Morocco after that. He’s really nervous leaving me. Larry is in the hay and I can’t stay out of the hospital. Ha! I did come home from St. Louis feeling hopeful. Andrew took me to the endangered wolf refuge which was interesting. He also bought me a vintage, Italian white lambs wool hat. I can’t wait for winter!! Thank you for remembering me and for all of your prayers. ~❤️

Deena Z  Patsy, oh my, I looked up several words in your post so I could better understand what is going on. I will start serial prayers for you (several daily). Waiting under Sept 11th/12th seems a long ways away, when you can not breathe well. If you tell your doctor that you can't breathe can't she/he moving this appt up? Also- I know I don't know a lot of the details regarding what is going on, nor how well established your cardiologist, but have your spoken to a nationallhy renowned heart center re: pulmonary (right?) on what can be done? -- Chicago, Mayo in MN, etc? That is, bring the big guns in? Comparing to cake decorating, which you excel at and love, it would be like bringing Buddy Valastro or Pierre Herme, on board?
Lastly, your son Andrew is such a sweet heart. What a proud mom you should be, you are.. If he ever needs ant help navigating the Washington, DC area, don't hesitate to contact me!

Patsy Stewart  You’re right, Richard. I’ve had several hospital stays  because I am retaining fluid throughout my whole body. They’re trying to keep me out of the hospital. When the vein in my neck was really thumping, I was to double up on my lasix. It worked for a while. One morning I got up and my whole body was swollen…even my face and eyes. They can’t drain my left lung because it is too hard to even get the needle in and it is loculated. My right lung started filling up and they are planning on draining  it weekly. I’ve never talked with anyone who has had this procedure, and I thought it might help to know how they are getting along with it. 

Klara Čičić  Dear Patsy, our heart gladiator, did anyone talk to you about heart transplantation? Is it an option for you? I am thinking of you from other side of the globe and sending you the biggest hug ful of love!!!!

Patsy Stewart  Nobody has mentioned a transplant. My lungs, esophagus and stomach are all a mess too. It would be about like trying to rebuild an old car. Lol!! Thank you for the hugs and love. How are you doing?

Patsy Stewart  We truly are blessed! I am thankful every day when I open my eyes in the morning and know that there’s still hope. Keep trusting and believing always! 

Patsy Stewart  I’m not familiar with  EBV B-cell lymphopraliferative disorder, but I have read up on the EBV ….Epstein Barr Virus. I know it is linked to Hodgkin’s lymphoma. 
I’m sure it’s exciting as well as scary to be signed up in the clinical trial. I pray your mind can be at peace with whatever you decide moving forward. I look forward to hearing about your final decision. Thank you so much for your prayers. ~❤️

Patsy Stewart  DeLois, it sounds like we have a lot of the same conditions. Where was your Hodgkin’s? My tumor was the size of my heart and  in my left lung and a place on my spine. About the first thing to go was my thyroid. My heart trouble was next. I have fibrosis of the lungs, pulmonary hypertension, pulmonary effusion, heart failure, cardiomyopathy, afib and lots of trouble with my digestive system. I too have the yearly mammograms with many scares along the way. I’ve had several basil cell carcinomas in places that have never seen the sun and also, several on my face. The scariest was one that started in the corner of my eye and made its way under my eye lid. I’ve had several Moh’s surgeries. My spine protrudes and looks like a bunch of knots up and down my back. My left chest is sunken in. I actually look like a skeleton, but I still put on my swimsuit and act like I’m the best looking gal ever. Lol!! Beauty comes from your heart anyway, huh?!! I’ve joked and said that radiation has damaged everything but my brain, and I’m beginning to wonder about that. I remember they tilted my head back as far as it would go and taped my chin in place where I couldn’t move my head during my treatments. The day my son was born, a team of doctors came into my room and told me that I needed to find someone to raise my son. I closed my eyes. I came out fighting and have never given up. God was and still is where I put my faith. My doctors don’t really know what to do with me either. I was thankful when one finally told me to ‘get out of town.’ She repeated it again last week. I’ve been extremely thankful for her referral to WU. I’ve never really had the chance to talk with anyone that had Hodgkin’s before. I’m thankful for you.

Klara Čičić  Wow DeLois, you are another "heart gladiator" in our community! I truly admire your attitude, positivity and courage. I hope they find a way to help your heart. Take care and update us on your situation.  

DeLois Tweedy  Klara, will do abt posting updates. I had my 6 mo echo and follow up with my cardiologist Fri March 24. Then I also started with the research team to begin the process of determining all things related to mitral valve replacement. 

Patsy Stewart  We are kindred spirits!! They didn’t really tell us back then what was before us in the future because of the radiation. They probably didn’t really know themselves. I can remember my oncologist telling me little tidbits at every visit, and I began to wonder if she thought I couldn’t handle hearing it all at once. I wish I would have known to go to a doctor who specialized in radiation damage before I had OHS. I’ve had quite the struggle, and can’t seem to pull out of it. I do have hope. I’m getting ready to go to a new doctor at University of Washington in St. Louis, MO in May. Thank you so much for your note, DeLois ! I’ll remember you in my prayers. 

Richard Munson  Patsy, always nice to see your posts, my little cake lady and adams angel. Hope you are doing well. 

Ana Brusso  Patsy, feel the same way as Richard. I have asked about you and so glad you posted. Love ❤️ you dear cake lady and now violinist. God bless you 🙏❤️

Patsy Stewart  Richard, you make me smile! I haven’t been on here much. I have missed you all and hoping you’re doing well. Has your eye gotten any better? How’s Nancy and Shadow?