Maddy turned 18 last week and we had her first visit to the adult CF clinic today. As a response to the visit I have decided to start a new blog about Maddy’ health. I am no longer in charge. She is allowing me to continue on in an advisory position. LOL The real point I am making is that she is in charge, not me. I have been trying to give her the tools to be fully in charge of her health decisions for a few years now and after today’s visit to the doctor I am assured that she is more than up to the task. More on that throughout the blog.
I have always blogged about the children’s hospital visits as a way to document, and vent, the complexities of living with this disease. As well as a way to keep family and friends up to date on their health issues. Now that I am blogging for an adult it will be from the perspective of the parent of an adult child. I have the power to suggest and advise but I no longer call the shots. That being said I will only be blogging when I have permission to blog. If you don’t hear or see enough updates to keep you satisfied don’t look at me, email Maddy and ask her yourself. She may or may not feel like talking. LOL
So, on to the update. Today’s clinic visit was supposed to be a transitional visit with the pediatric and adult CF doctors. Unfortunately because of a traffic snag most of the adult team could not make it. We did meet Suzanne, the nurse coordinator for the CF team, and we like her a lot so far. But before we got to meet her we got some pretty bad news. Maddy’s PFT’s were at 25%!
She was pretty sure her numbers had dropped a little over the last few days because she seems to have a few mucus plugs that she just can’t get to move out. Neither of us was ready for a 25 though. A very rough start to the appointment. We then had to wait what seemed like forever to see the doctor. Finally Dr. Gondor came in to speak with us. She was obviously as frustrated with the 25 as we were and went right to work finding out what was going on. Oh, and she didn’t speak to me except to say hi.
Maddy let her know that she is currently doing three vests a day, along with two pulmozymes. (That’s the stuff thats supposed to make the mucus thinner and easier to get out.) She is also on the inhaled vancomycin, which Maddy said does not seem to be doing any good. The doctor let Maddy know that, given the fact that she is doing everything possible and her numbers are still going through the floor, it’s time to get the lung transplant evaluation. Maddy agreed whole heartedly. The doctor and Maddy then spoke about the fact that doing IV antibiotics in the hospital have not been bringing her numbers up lately. The doctor offered to put Maddy directly on home IV’s so that she would be available to go directly to the adult doctors for the evaluation as soon as they can get her down there, maybe even Friday. Maddy thought she did better on the inhaled aztreonam and vesting at home because she can’t vest while she is accessed. The doctor agreed that would be the best course of action and added oral cipro.
As Maddy and Dr. Gondor were discussing the above the adult CF coordinator, Sue, got there. She sat in on the discussion and then met with just Maddy and I after Dr. Gondor and Maddy came to their agreement. Sue agreed with everything Maddy and the doctor decided and then let us know a little about the lung transplant evaluation. There is going to be a lot of work involved in the evaluation. We only got a brief overview today so I will not try to explain it all right now. Here are some of the things about the adult clinic and the transplant.
We will have to meet with a team of physicians, dietitians, nurses, psychologists, social workers, financial advisors and who knows what else. There will be many tests and appointments to go to. Then the transplant decision making team will get together and decide if she gets on the list. One of the big hurdles Sue mentioned that many of their new patients have trouble with is that they can be declined because of compliance concerns. She said that hearing the discussion Maddy just had with Dr. Gondor she was sure that would not be a problem for Maddy. Sue was also very impressed with Maddy’s knowledge of her treatment, care and medical history. She said Maddy’s ability to show the evaluation team that she knows what’s going on and that she can stay on top of things is a big plus.
Everything Maddy and Sue talked about was very positive. Sue seemed confident that Maddy will not have a problem getting the transplant. She mentioned that she was hopeful that it would come very soon. Especially given the way Maddy’s numbers have been dropping. The drop in numbers is my biggest worry at the moment. Another good thing about the adult clinic is that Maddy will not be doing PFT’s every time she goes to the doctor. Sue said that by the time your numbers get so low that you need to be on the list there is no point making you blow every time because it is just so demoralizing. Maddy was instantly perked up by that news! She said “I know! It’s so depressing coming in here knowing that my numbers are going to be crap and then having to see those crappy numbers.”
In summary. Maddy is home and feeling OK. It’s hard for her to breathe but she is doing lots of airway clearance and is confident that after a few days on the inhaled aztreonam she will feel even better. We are waiting for the adult clinic to call us with a time to go in for our first evaluation visit. In the mean time we have both sets of doctors ready to admit Maddy if she calls and asks to be admitted. She also has another appointment with the pediatric clinic in two weeks just to monitor her while she gets settled in with the adult doctors.
That’s it for now. I will update as Maddy allows me to. It’s a new day in the treatment of Maddy’s CF.