PHighter Friday Follow Up: Reinee

Since my last post, I've just been trying to take in all of life's blessings. I recently participated in the Race Against PH held by Stanford Hospital's Vera M. Wall Center for Pulmonary Hypertension. I had about 20 of my family and friends participate with me and it was fun! The outcome of these annual races are pretty overwhelming with the amount of supporters and sponsors. It's amazing to see everyone come together to raise awareness for Pulmonary Hypertension. I didn't actually run the race, but I power-walked the entire way and saved my energy to jog across the finish line. My family and friends who ran ahead waited for me a little before the finish line so we could all finish the race together. That moment was amazing and it felt great. I've only participated in Stanford's Race Against PH one other time before, in 2011, and compared to that, the event has really grown. If you haven't participated in a marathon for PH, I urge you to. It's such a wonderful experience.

Another major thing that has been going on in my life is the process to have kids. I say "process" because it is in fact a process, a very long one. My husband and I are currently going through the process of gestational surrogacy. That is when they take our embryo and implant it into our gestational carrier, or surrogate. When it came to our talk about having kids, which was well before we got married, we knew that it was not in the cards for me. I cried. I was depressed, but I had work with the cards I was dealt. My husband and I knew we wanted to try to have our own kids and obviously, this was the only way. We both had long talks with my doctors, nurses, and social worker about the risks, but I was willing to take them... and so was my husband. I honestly feel like I'm at my healthiest I've ever been so now would be the perfect time. There was a catch to going through with surrogacy though, and that was to get off of Tracleer. For those of you who don't know, one of Tracleer's main side effects is birth defects. My doctor decided that I needed a 3-month wash out period so that Tracleer would no longer be in my system at the time of egg stimulation. There haven't been any studies on the effects of Tracleer on eggs, but there have been studies of the effects of Tracleer on pregnant rats. So my doctor wanted to be safe and wanted me to produce the healthiest eggs needed for fertilization. I wasn't worried at all, but my doctors were a bit concerned. Of course they had to be concerned, they're my doctors. Their exact words were "we are not encouraging this, but if this is what you want to do, we fully support you and will take whatever steps necessary to make sure this happens for you." And honestly, that was exactly what I wanted to hear. Support from my team of doctors is all I need to know that everything was going to be OK.

My husband and I are now at the point of looking for legal representation and we're also waiting for our gestational carrier to be cleared of all initial testing with our fertility doctor. Genetics testing has been done, bloodwork, psychological and personality tests have been performed, as well as physicals. I have been off of Tracleer for about 5 weeks now and I feel fine. The first week was hard. I thought I wasn't going to be able to take being off of Tracleer, but I think my body just needed time to adjust; it was definitely going though withdrawals, though. I experienced a tight, heavy chest and minor palpitations, but I'm not a stranger to these symptoms so I just took it easy and continued to work. I'm completely fine now, and I'm still on Revatio and Tyvaso. 

Aside from the PH race and surrogacy, I have also recently challenged myself to snowboard with my husband in Lake Tahoe. I was scared at first because the last time I visited Lake Tahoe I didn't do so well. The elevation got to me, BUT at that time I was not on all the therapies I am now. Honestly, this time I was real nervous and still skeptical. I even had second thoughts about actually trying to snowboard so I had my husband hold off on buying me a lift ticket. I sat and waited in the cafeteria until it was time to do my next session of Tyvaso. When my husband came to check up on me after he did a few runs, I just said "alright, let's go!" I figured that if I came here with the intent to TRY, I might as well TRY. I felt fine, nothing was really holding me back except fear. We ended up snowboarding for about 5 hours. I had more than a few good spills, but I got the hang of it and I think I have a new found love of snowboarding! 

Sometimes I feel guilty about sharing my experiences, only because I know there are newly diagnosed patients out there who are feeling horrible. I remember being newly diagnosed and attending a support group with a couple of patients who were doing so well. For some reason, it made me feel worse because there they were living life and here I was thinking mine was ending. However, I want all of you to know that it took me almost 12 years to feel this way. It wasn't an easy battle, either. Please know that I'm active because my body is at the point where it's allowing me to be active. I don't feel crappy and try to push myself to do these things. I also want all of you to know that challenging yourself, even just a little, will give you hope. Don't ever be scared to get off of oxygen, or go for a walk, or get out of bed, even. Give yourself a new challenge everyday, it doesn't even have to be physical, but if your body doesn't allow it then at least you know your limits. Don't ever give up on yourself, keep PHighting! And always remember, you don't live with PH... PH lives with YOU.