Busy Two Days

I am updating as Maddy takes a little nap following her heart catheterization. We are on the last day of the two day marathon work up. We had to be at the hospital by 6AM both days. Yesterday they did most everything on the list. Today we finish up with the heart cath and the last few consults. Here is the list... (photo on twitter)

Consent for transplant - simple signature.

HIV consent - another signature.

Labs - 12 tubes of blood, this included all her tissue typing, urin, and a sputum sample

ABG’s - Arterial Blood Gas, this is where they stick a long needle in the artery on your wrist and check the oxygen level of your blood.

EKG - heart test

CXR - not sure what this one was.

Stool sample - eeew!

Place PPD - this is the under skin TB test where they inject a bubble of liquid under the skin of your forearm and look at it three days later to see if you have a reaction.

Bone Density -scan her hip and a part of her spine to check the strength of her bones. Done with an X-ray type machine.

Abdominal Ultrasound - checking her liver and kidneys.

Echocardiogram - heart test

PFT’s - they did regular room air PFT’s and they put her in the chamber. The chamber gave her a little anxiety.

6 minute walk - they let her walk at her own pace for six minutes and see if she runs out of breath. (I hear the tortoise would have won)

VQ Scan - this is a lung scan. They injected her with a “slightly” radioactive material and watched it move through her lungs with a scanner. (photo on twitter)

Cardiac Cath - is the passing of a thin tube (catheter) into the right side of the heart and the arteries leading to the lungs to monitor the heart's function and blood flow. (photo on twitter)

Consults:

Thoracic Surgeon - need to meet today

Social Worker - met a few weeks ago

Dietician - need to meet today

Lung TX Pharmacist - met yesterday

Psychology - met a few weeks ago

Ansthesia - need to meet today

GYN - because she is a woman now

So that’s what we have been doing the last two days. I had to work yesterday so I was here with her until a little after noon then her mom came and hung with her the rest of the day. Maddy has been staying at my place because we have to be here at 6AM and it’s easier for me to get her here that early. I pre recorded my shift today so I could take the whole day to be with her today. I was not sure when they were going to do the heart cath and didn’t want to risk not being around for that.

After this her case will be presented to the lung transplant decision makers and we will get our answer. Her case goes in for review on April 14th and Kim, the lung transplant coordinator, said she will call Maddy that afternoon with the answer. We have three possibilities, No, Yes, or Later. Later would be the answer if something irregular comes back from one of these tests that they have to address before they can transplant. Of course we are hoping and praying for a YES!

Thats it for now. I’ll keep updating on twitter and FB as time permits.

http://twitter.com/daviswatts

http://www.facebook.com/davis.watts

Not Blogging Much

Well, it has been quite a while since I updated this blog. Not because Maddy has not wanted me to but because things have been very busy, and mostly stable. I will attempt to update this in a coherent manner and still not bore everyone reading it to death.

Lets start with Maddy’s lungs and the picture on top. The picture is from early February, Maddy went into the hospital on February 1st for a week of in house treatment then a week of iv’s at home. I kept everyone up to date with email’s as I was in Nashville when she went in and didn’t have much time to blog after. The treatments helped her a lot but her lung functions are still very low. Which is the next part of the story. As you are probably aware we have been trying to go through all the hoops to get Maddy listed for a lung transplant. Our efforts are slowly paying off. She has had many doctor visits and tests and there are many still to go. In our last round of visits the doctor gave the green light to switch Maddy from the CF clinic to the lung transplant clinic. Her PFT’s are down to 20% and the doctor said she has about a 50% chance of surviving another two years. Time to get on the list!

Her next appointment was with the social worker who will be working with her through the entire transplant process. Maddy’s support team is in place, me, Melissa, Gram & Grand Bobby and Stephanie are all listed as her support for all the pre and post transplant doctor visits. Her primary care giver post transplant will be Melissa, obviously because she lives with her, but she will be able to come stay at my house any time she wants. I won’t get into too much detail about the post recovery. Suffice to say it will be about a month in the hospital post transplant then three to four months of intense work at home with daily then weekly doctor visits to keep her busy.

The next hoop we have to jump through to get her on the list is an intense two day study where the doctors will go over every inch of her to make sure all her other organs will be able to handle the transplant and the drugs she will have to take post transplant. The main concerns are heart, she will have to get a heart cath before being listed, kidneys and liver. The kidneys and liver are important because of the medications she will have to take after the transplant to keep from rejecting the new lungs. This will be medication she has to take the rest of her life. But she is use to having to take meds everyday anyway.

After the two day work up, her file will be put before a panel of doctors and nurses who will go over everything with a fine tooth comb and make the decision to allow her on the list. If they believe the transplant will give her a better quality of life, extend her life considerably, and she can survive the procedure and recovery process, then they will put her on the national organ donor recipient list. After that we wait for a match. Maddy will have her antibodies tested and typed every month and will not be allowed to be further than two hours away from the hospital. When the social worker mentioned this part Maddy said that a soon as she gets on the list she is going to camp out in the hospital parking lot with a sign that says “waiting for lungs”. That got a laugh!

I think that is most of the information that I have not shared recently. I will try to keep this blog updated as we move further into the transplant process. There is a website that the transplant doctors office maintains where people who have been involved in lung transplants can interact with each other and post information about their experiences with the transplant. Maddy has joined but not spent any time there. I have not either. I will try to get involved and pass on more information from there soon.

Maddy is doing well at her new apartment with Melissa and Ralph. I sure miss having her around. But I’m working most of the time anyway so it’s not that much time missed when you really think about it. Maddy comes to visit us for the weekend every so often and it’s great to hang out with her when I can. She is still struggling to breathe quite a bit but seems to be able to move around a little more after that last hospital visit. You can always catch pictures and updates about her directly from her. She is mostly active on Facebook so look her up if you are not her friend already.

Maddy Is 18 Now!

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.