Good evening friends and family:
This past Tuesday, Tyson and I met with our pulmonologist, Dr. Sachs in Stamford. We were hoping he could offer a small, temporary solution for Tyson’s breathing and swallowing troubles so that he could be comfortable and benefit more from his PT sessions. Because Tyson is so weak, he was forced to wear his bipap in the car and in the doctor’s office. I updated the doctor on Tyson’s condition (the last time he saw Tyson was in 2012 when he had the bilateral pulmonary emboli and we were about to go to India for the first time). I explained that this is a rapidly progressing disease that we are racing to keep up with and while he has been steadily declining for the past 4 years, there have been marks of significant improvement throughout the process, almost entirely due to the stem cells. He said that while he is ignorant to the subject of stem cells, he does not discount their potential. I explained that his muscles have grown so weak that it’s become increasingly difficult to breathe and swallow, which was totally apparent as we sat there in his office. His suggestion was not for a pill or a special inhaler like we had secretly hoped, but for an immediate tracheotomy. He said that Tyson was facing respiratory failure. As we sat listening to the doctor explain the procedure, I fought to hold back tears. I looked at my husband, struggling to breathe with a tear rolling down his cheek and I began to cry. The doctor spoke to us about some patients being adamant about not having a tracheotomy ever, even if it means saving or prolonging their life. He asked if we ever had this conversation and we said, “no, not really”. I think at some point, he asked if we wanted to go ahead with it (he was ready to admit Tyson that moment) but Tyson shook his head and said, “no.” Dr. Sachs said that we were taking a huge risk at this point by not having it done and just trying to get by on our own and if at some point Tyson became too weak to breathe, there would be nothing I could do. His objective was to put us in a position that eliminates risk and takes the danger out of play, so to speak.
I gave him Dr. Shroff’s contact info so they could discuss and we left his office. He asked us to think about it and let him know what we want to do.
Tyson and I spoke very briefly about this; we decided it wasn’t time to take this step, that we were happy to learn about the procedure in the event that we do need it someday and that we would continue pushing through the way things were. By Friday, Dr. Shroff emailed to let me know she and Dr. Sachs had spoken and that she wanted to talk to us. The following morning, (evening in India), she called. She told us that Dr. Sachs felt strongly about the procedure for Tyson and that she agreed. She said, “it’ll keep him safe and it is reversible!” She said, “you remember we almost lost Tyson a year ago, we cannot risk that again. This will actually help him get stronger. He will breathe better, his cells will get the oxygen they need, he will sleep better and should even be able to speak and eat again!” This made sense to me and I immediately felt at ease hearing it from her. I brought the phone into the bedroom and held it up to Tyson’s ear. She explained it all over again for him to hear and said to him, “Tyson, you’re a very strong person and you need to stay strong. This is just a phase! This is a phase and you need some help getting through it. Once you feel strong enough, come to India and we will begin the weaning process.” Tyson nodded and whispered “thank you”. Before we hung up, she gave me a small list of supplements and vitamins to get Tyson on and asked me to have Dr. Horowitz find as many “nerve growth factors” as possible to get him on as well. Ugh. This has felt like an enormous, crushing blow, but as Dr. Shroff said- don’t look at it as a step back, but instead, consider it as the thing we need in order to move forward.
So it’s settled. I will call Dr. Sachs in the morning to arrange the surgery. I know Tyson’s scared. I’m scared and my heart breaks for him. I pray that he sees this as a turning point for the better and that the good things we’ve been praying for to see will start appearing as a result. I’m worried/concerned, too with regards to Calvin. It’s bad enough he has to see his daddy like this, but can he handle one more scary thing? It beats the alternative, so we will make sure we talk it over with him so he’s comfortable. It all seems to resonate best with him when I put it in terms of superheroes…which obviously is the category his daddy falls under.
I’ll leave you tonight with a very hopeful story: I’ve mentioned in the past (or at least I think I have), about a German patient who suffered from Lyme/ALS and received stem cells at Nu-Tech just like Tyson. Her name is Christine and she is a remarkable woman whom I’ve had the pleasure of talking with on a few occasions. She is the woman who everyone at Nu-Tech said Tyson reminded them of because of the nature of their illness. I’ve reached out to Christine in the past for support when I was at a loss of words with Tyson. I reached out to her most recently about a week ago. I asked her if, at her worst, did she ever have difficulty breathing or swallowing. She said, “oh yes! And it got much worse before it got better and even then, that took a long, long time”. She asked what Lyme meds Tyson was on and I told her that he’s just on IV rocephin (which, by the way, is considered to be the most potent Lyme drug) and that he’s tried almost all other Lyme meds at one point or another. She said that her LLMD (Lyme literate doctor) in Germany, put her on an antibiotic protocol that she attributes, along with the stem cells, to her healing.
Um, so can I have that recipe?? 🙂
She gave me the names of the antibiotics and I passed that info onto Dr. Horowitz and his team and to our neurologist who said to definitely try it, as long as there are no side effects that are unmanageable for Tyson. There is a theory among some Lyme doctors and patients that by playing with the variable/combinations of antibiotics and medicine schedule, you are able to successfully kill more of the Lyme bacteria. I think that’s because after treating w the same medicine for so long, the spirochete become sort of intelligent and learn to evade it. So when you take a break from the meds, they creep back out…and then you hit them again with different meds and so on. Tyson feels good when he’s had the rocephin, so it stands to reason that perhaps there is more we can do to fight the lyme. I am so curious and hopeful that we can work with the German doctor and find something that’ll click for Tyson.
Christine told me to tell him to think positively and to stay strong…he WILL get better. You can’t beat that attitude. I ran into the bedroom to tell him about our conversation and his face light up.
If you didn’t know already, my husband is a fighter. We will get through this next step and he will continue his healing process. Thank you for your love, prayers, and good thoughts.