CF Happens

(Bear with me, this is going to be another long post in order to give all the information i want to give. Once again you will probably learn something new while reading the update)

The first test today was the RVG (radionuclide ventriculogram) scan. It took 2 tries to get 1 IV so they used the same IV for both meds they injected. They like to have 2 IVs to use (1 for each med) but it is ok to do with 1 IV. They flushed it with 3 saline syringes to make sure it was good and clear. The first med is not radioactive. They injected the first med and then 15 minutes later they injected the radioactive med. The meds basically combine in the blood stream to make it able to see how the blood is flowing and how the heart is pumping. I had to lay down on the bed and lay still while the machine was at an angle taking pictures of my heart but 10 minutes. The machine was then moved to another angle for pictures for another 10 minutes. Then it was moved again to another angle for pictures for another 10 minutes. The images were checked by the doctor to make sure they were ok. They were ok’d then my IV was removed.

Next appointment was with the dietitian. Every CFer that goes through the lung transplant evaluation has to meet with the dietitian. This appointment is to talk about any nutritional needs that I may have. There are quite a few CFers that have feeding tubes especially when they are close to needing a transplant to get enough calories in to maintain their weight. I obviously don’t have a feeding tube or any need for supplemental calories because I am able to maintain my weight.

Final appointment for today was with the transplant doctor. It went as I expected it would go. I am still early in the transplant process and getting all my testing up to date was the main objective of this weeks appointments. Having all my testing up to date will make it much easier for me to get listed quickly in the event of a rapid decline in my health. We don’t want to have to backtrack and do any of the necessary testing in an emergency that would result in my needing to be listed quickly. The heart cath will happen when I’m closer to being listed for transplant.

The goal is for me to use my natural lungs for as long as possible. A lot of people ask why I can’t just get lungs now since I obviously have trouble breathing already, my lung function is at 30% and I’m “healthy.” Unfortunately that’s not how it works. You need to use up your natural lungs for all that they have to offer before getting a new set of lungs to extend your life even further. So yes, I will get worse before needing/getting new lungs. It’s just how it goes. Trust me, if it were an easy surgery, easy recovery and if it meant I would live until I was 100 with no complications and I was allowed to get the surgery I would be all over getting a new set of lungs. That’s just not how it works. I just have to keep doing what I’m doing and living life to the fullest while I can. We will cross the transplant bridge at some point. I’m doing everything I can to be as prepared as possible for when the time comes. Most everyone has asked how I’m doing mentally with all this. I’m actually great with it all. I know this is just the next step in the process for transplant. Not everyone chooses to be evaluated for transplant for one reason or another which is just fine. I’ve always known this was the path I wanted to take when it was time and my lungs crapped out. My depression is under control, as is my anxiety. Yes, I take an antidepressant to help and I see a counselor who I love! I have all the things in place to help with my mental health which is very important to me. That’s not even mentioning my great support system. I’m thankful for all of you.

The doctor said that (of course) I need to start exercising to help prolong the lung function I do have. Exercise is a great airway clearance just like the vest I wear during my breathing treatments. The deep breathing during exercise helps keep my lungs open and working like they should while conditioning them. The bad part is I absolutely hate exercising, especially organized exercise like walking on the treadmill. It’s boring and I’m not a fan of being short of breath. It really feels counterproductive. Haha. I know it’s what I need to do but exercising has never been my thing no matter the amount of lung function I have. I’m going to try my best to get in a routine of walking on the treadmill to work my way up to walking 30 minutes a day, at least 5 days a week. Just know that I’m not happy about it. Haha

I still have the appointment with the financial coordinator on Thursday to discuss what insurance covers in regards to transplant and fundraising options. I do have a COTA (Childrens Organ Transplant Association) fundraising page. COTA is great because they offer their services for CF patients of all ages not just 18 and under. All donations made to my COTA page are tax deductible which is great. So unlike gofundme who takes a percentage of the money donated, all of the money I raise through my COTA page goes to me and my transplant associates financial needs. I am able to submit receipts for things I pay out of pocket for and then I’m reimbursed from the funds I raised. Some of the things that I’m able to use my COTA fund for are medication copay’s, hospital bills, doctor bills, hotels for appointments because I’m not local to my transplant hospital, food (groceries or eating out) while at appointments for pre and post transplant care, living expenses associated with post transplant like an apartment, gas to and from appointments, all bills to maintain our home in TN post transplant while I’m in St. Louis recovering for at least 3 months, to name a few.

You can go to my COTA page to read up but I do all updates here or you can go donate if you would like to. Here is the link…. https://cota.org/campaigns/COTAforShannonM

I will follow up with the transplant clinic in 6 months. I will do labs, full PFTs, 6 minute walk and see the doctor during my 6 month check up. Thank you all so much for all of your support over the years. It is much appreciated!

Until next time…