It is hard to believe more than a year has passed since the last PH conference. The 2012 conference in Orlando will be just as great.
So much has happened in the past year. A year of H _ _ _ awaited my return from conference. That it was but I emerged a stronger person. First on the agenda was breast cancer surgery. I found out just before leaving for CA the breast cancer from 2001 had returned.
I had an uphill battle with the surgeon and plastic surgeon about what procedures could be done. I could not see me wearing prosthesis and opted for a mastectomy with reconstruction. That meant a much longer surgery plus a second surgery to complete the reconstruction. I had one supporter who made all the difference, Dr Tom _____, a cardiothoracic anesthesiologist. He did a presentation at our support group meeting maybe 2 years before. Little did I know I would need his service. The program was entitled "When a PH Patient Needs Surgery". I never experienced medical concern like he exhibited. Having PH makes one more at risk for surgical complications. So glad I saved his email address. After agreeing to be the one to manage the anesthesia, he called the surgeon, the plastic surgeon and the pulmonologist to explain that if there were going to be complication from the PH, it would happen very early in the case. If everything was going well there was no reason the case could not be extended the additional 2 hours needed for the first stage of reconstruction. If things were going sour, the surgeon could stop after the mastectomy. He contacted the pre-anesthesia folks to update them prior to my visit. Then beyond my expectation he gave me his home phone number, cell number and beeper number to call him as soon as the surgery was scheduled. Just as amazing, the evening I called he spent 2 hours on the phone just talking--allaying fears and telling me what he would do to keep me save.
July 13, 2010 had the mastectomy and first stage of reconstruction. Anesthesia and surgery went without a hitch however I was not without complication. I had no idea what was happening but I developed swelling in my chest and back. When women have a mastectomy you know that arm swelling is a possible complication. I had never heard of what was happening to me--truncal lymphedema meaning my lymph system was not able to handle to fluid drainage so it collected in my back and chest area instead of my arm. An occupational therapist taught my husband the needed techniques to help the lymph fluid travel in the right direction to drain. Every night he had to do these massage techniques. He did this with great care and so lovingly. I also needed to wear compression garments to help keep the fluid from collecting. Finally after weeks of massage, the swelling became less and less until finally it could finally work on its own.
I saw the oncologist in October which to me was a big mistake. It should have been before the surgery so I could weigh all options. No I would not be taking chemo or radiation this time but based on the things she was telling me, I know I would have chosen a different course. It was too late for that now. She wanted me to quit taking the testosterone gel--long story for another entry and take Evista in hopes of preventing a recurrence in the other breast or worse yet metastasis.
Actually I need to briefly discuss the testosterone gel. More than a year before I went to see a friend from church who happened to be a reproductive endocrinologist--who knew all there is about hormones. I took research articles with me in hopes he would agree to start me on the testosterone. The research was done on rats and then on human lung tissue--no clinical trials. Testosterone is not only needed for muscle strength and endurance but due to the NO pathway has a vasodilates the pulmonary arteries. Woe there! Analytical reasoning--women need a tiny bit of testosterone. I had breast cancer in 2001 with chemo and radiation. Chemo chemically killed my ovaries where testosterone is made. How could I be so stupid. Testosterone dilates the pulmonary arteries. Could this be a contributing factor to the PH? After taking the testosterone gel for only 3 days, muscle pains that I thought were coming from the scleroderma were gone. Mind you, I still plenty of other joint pains. Sandpaper dry eyes had improved to the point that I could not even tell when the plugs in my eyes washed out. Testosterone is also needed for tear production.
Being a good PH patient, I ordered copies of my medical records. I could have spit fire when I saw the oncologist consult note which said something to the effect "she needs to take the Evista and come off the testosterone. She can take another calcium channel blocker for the PH". I was so mad. This told me she knew nothing at all about PH. I would love to take a different calcium channel blocker and be able to breath better. Only if it was that simple. My next drugs are inhaled or IV. I could not bring myself to take the Evista for any more than 3 days. All I could think of was the bone pain that I had while taking Tamoxifen after the breast cancer in 2001. Without any injury, I even developed a bone bruise in my right knee with edema in the bone marrow. They are sister drugs.
By the time I went back to the reproductive endocrinologist, I felt terrible for being off the testosterone for 2 months. We devised a plan where he would give me low dose and I would have frequesnt monitoring of the estrogen and testosterone levels. HE also referred me to a gyn oncologist as I was not going back to the previous one. I am well aware that I am treading on thin uncharted ice but it is my body. The new oncologist spent 2 hours going over with me every possible treatment option. The bottom line as it circled around was the same path I was on.
Stage 2 reconstruction was done on November 2, 2010. I was groggy when the nurse gave me three half pills. When I asked what they were--she told me Viagra which I knew was the same drug as Revatio for PH so I took them. The previous inpatient stay I brought and took my own PH drugs. This time I would only be in overnight. Within a short time my BP fell out the bottom and I spent the night in trendelenberg position (head down, feet up) and taking loads of IV fluids. By morning my BP was up to my low normal and I was discharged. Later that day the specialty pharmacy called about filling the Letairis. When given the opportunity to speak to the pharmacist I asked him if Viagra can be split. His answer was absolutely not as you interrupt the special coating that allows the drug to be absorbed slowly. having three half pills--I had 3 areas from which rapid absorption occurred.
With everything going on I was forced to cancel our yearly fall PH golf tournament. That was sad but I saw no way for it to take place. We would reschedule it for the spring.
My husband wanted a different course for the tournament. We spoke to them in early December and set the date--May 14th. I had not planned on working on the tournament until after the first of the year but had a call asking me to submit a grant application before the first of the year. This required a budget, action plan, timeline and the grant application. Wow--right here before Christmas. It was submitted in a timely fashion and approved.
Real work on the PH tournament started after the January 1st. There were other grant applications to make, save the date card to make and mail, letters to write, registration forms to make and mail, businesses to visit. Right in the height of these activities I fell and sustained a significant injury that had me non-weight bearing for 5 weeks--bone bruise of the right knee again along with a large hematoma under the kneecap. How could the tournament work be done. It was extremely hard. I wrote more letters than ever before using the laptop upstairs where I could keep the knee elevated but the wireless printer was downstairs in the computer room. So I would print and print letters. When my husband came home he would collect all the letters and bring them up to be stuffed and prepared for mailing. This went on for weeks. Finally I was able to start putting weight on the knee and it was off to PT, still trying to pull this tournament together.
The NC Cure PH Golf Tournament came off with a few only a few hitches like 2 weeks before the golf course did not plan us to needing be inside as there was also a wedding and we were not supposed to bring our own food. Well they improvised and allow s to bring food since it was already ordered and they rearranged furniture to allow us to be inside. Plus the last minute doctor I enlisted to speak, called early that morning. He could not come as his kids were sick. did I believe him--yes I did.
A couple great things happened with regards to the tournament. One couple who always played with us had been hounding a friend who is general manager of the KIA dealership to put a car up for a hole in one prize. he finally agreed. We spoke briefly on the phone twice. When we finally met on tournament day he said to me "I had no idea what pulmonary hypertension was so I asked my mom who is a retired nurse. Anytime you do one of these events I will be happy to sponsor a car as a hole in one prize". WOW! I could hug his neck.
The other wild event kind of transpired with a lot of divine intervention. I her name on facebook--a longtime childhood friend of my son. She used to work in the NASCAR business and thought maybe she could get me a door prize or silent auction item. I sent her a private message. She called a few days later and explained that she has been out of the business for a long time and lost most of her contacts but she would try. Later she told me she prayed about it as she wanted to get me something special. Did not hear from her for a few weeks. She called to tell me what happened. Since her husband restores and builds race cars they were invited to the 2011 NASCAR Hall of Fame dinner. she was not feeling well that evening and her husband went alone. He came back just as excited as a kid getting his first puppy. Tiff won the grand door prize. As he was telling her what it included she is shaking her head until he got the message--we can't keep this. Nope! I prayed about it and it is going to Cindy. You would not believe but it was a NASCAR racing helmet signed by this year inductees--Richard Petty, Bobby Ellison, Junior Johnson, Ned Jarrett, and a could other that right now slip my mind. Plus there were 4 tickets to the pole race Thursday before the Coca Cola 500 and a copy of the photo CD that was shown during the dinner. Can you believe it. Eat your heart out racing fans. We had no idea what the helmet was worth. I received it 3 days before the tournament. Feverishly I snapped several pictures and forwarded to a sports memorabilia company to get an appraisal. Because the signatures were not authenicated the estimate was low $1650 to $1750. There was no time for the authentication process. Here is where the story gets good. A three way friendship because of different reason brought all this together. I called a nurse I used to work with as our former boss had passed away. They are also friends with Tiff's mom and her husband. We know Tiff and her mom from living 4 houses apart years ago when our kids were little. My son and Tiff stayed friends all through school and college. Kathy, the nurse already knew about the helmet when I called her. She told me her husband would start the bidding at $500 even though he would not be at the tournament. We did not get one bid on the helmet starting at $500. I contacted Tiff to talk about the three options. 1) I could see if Virgil was still interested in the helmet for $500. 2) I could spend another $150 and get authenticated or 3 I cold give it back to Tiff to wrap up and surprise her husband at Christmas. Tiff said hat if Virgil was not interested she would buy it back. There is no way I would let her buy her own helmet. After calling Kathy to see if her husband was still interested, she becomes very quiet on the phone. It seemed like 20 minutes went by before she finally said "let me see if I can get more money out of him". We laughed. A few days later when we spoke she told me what she said to him, "Cindy Said she got one bid on the helmet but if you still wanted it she would let you have it for $600". SOLD just like that. If he ever finds out the only other bid was his--he would murder bothe of us. Not really--he knows we are both certified nuts anyway. The tournament netted just over $18,000 of which $5000 will go toward patient scholarships and the rest to research. Thanks to all those who helped make this event possible.
We just wrap up a busy month with the golf tournament and along comes June. I had been helping One of the UT employees for several months with details for their upcoming PH 5 K Run. All proceeds were to benefit all the Carolina PH support groups. Went down to Raleigh the night before the race. Dinner was great fun but 4am came very early. John and I were out there just after 5 AM. I was amazed at the response of the event for a first time event. Figures have it around maybe 300 people. Somewhere around $17000 were raised. PHA decided to use the funds for Conference scholarships. We are so blessed.
July brought the UT Educational Dinner. It was great--met old and new friends.
As mentioned July 1st is the beginning of my New Year. With the breast cancer behind me, I can now focus on PH awareness and finding a cure. Before moving into that mode we had our grandson visit one week in July and one week in August. Kids are so full of energy and so very smart. He was a joy.
Thanks for listening. For more PH information visit www.phassociation.org