Just had my 5 year check up with my Transplant team. Statistically speaking, only about 50% of lung transplant patients are still alive at 5 years. I know quite a few friends who didn't make 5 years and I know quite a few who are even farther out than 5 years. I'm oh so very thankful to still be here. Forever grateful to my donor.
I was hoping to see an increase or at least stability in my lung function. I also went to my appointment knowing I needed to bring up the issues I had been having in the last month with my kidneys. The lung function side of the appointment went great. I actually had a 2% increase. And in Lung Function Land we celebrate even the smallest improvements. It's better to be going up very slowly, then down at all. As for the kidney side - nothing good happened!
I figured I had a kidney stone. I've had one in the past and it felt the same. After my routine labs came back it showed my white blood cell count was sky high, we immediately knew I had a kidney infection. I also had a low grade fever - another sign of infection. So step 1 is control the infection and step 2 is to figure out if there is really a stone or just and infection. Step 3 would be if there is a stone, how do we get rid of it.
When dealing with Teams of doctors - it's a small group, so I don't always see the same pulmonologist. This particular Doctor in CLE, I have seen before. He's not my favorite. He's a great doctor, very knowledgeable and he's a nice guy. But He's possessive over his patients. If he sees you and diagnoses you with something - he likes to the run the show, he doesn't like input from other doctors. This doesn't work for me. I need someone who is open to working together with my CF team back here in NH. The other big thing he does - that I don't agree with - is his first line of defense for everything is a hospital admission. And my thought is it's so you are right there for him to watch over and control everything.
Now I've been called stubborn and hard headed before about medical stuff. But that's because - yes you are doctors and know more than me about these diseases and infections and such BUT I know more about ME than they ever will. I know what I'm capable of and I know all the pains and pings in my body. I've been honing this skill for 31 years. I will agree when I know a hospitalization is necessary - I've done it a million times. But I really felt like we were jumping the gun this time. And as a patient you need to fight for yourself, every time. I'm not trying to be a pain in the ass patient but I'm also not just going to sit back and blindly follow everything you say - I'm not a sheep.
He wanted to admit me immediately for my kidney infection. So I fought back against being admitted in CLE. I reluctantly agreed that I'd do an admission but I wanted to do it at home in NH. After some back and forth with my CF team in NH and the Transplant team in CLE we made a deal - I could come back to NH with the intention of being admitted through the ER immediately upon my return. And CLE would give me oral antibiotics in the mean time to hold me over. Now this is 1 night we're talking about. It's not like I was putting it off for a week or something. So we headed back home.
After 1 day of oral antibiotics I felt a thousand times better. No more pain, no more fever - so now I'm really annoyed at the thought of being admitted when oral antibiotics could work. I know it takes more than 1 day for antibiotics to take its full effect but improvement after 1 day is a good sign. So on our way home I talked to my CF team - who haven't even seen me, they've just been going off of what the CLE doctor said - and made a new deal with them. I could go home, not to the ER, and then the next day go for a CT scan of my kidneys to check for stones and then see them in person for an
appointment and go from there.
So after I got home, the next day I went in for my appointments. I do have a stone. BUT they don't think it's in my kidney. They think it's out side my kidney, more in my abdomen between my kidney and ovaries. So a little weird that I had back pain and not abdominal pain. Further blood work also showed that my white blood cell count was going down. So the oral antibiotics were working for the infection. After another long day at the doctors it was decided that I'll continue the oral antibiotics for another week and a half, no hospital, more blood work in a week, and as long as the stone doesn't move and cause me more pain we will leave it alone for now. And since they are pretty sure the stone is calcium based stone, a new diet change.
Eventually I may have to have the stone removed but at this very moment my creatinine level is 1.7, most likely because of the infection. A normal level is less than 1 and my normal level is about 1.2. So the next test they want to do once my level goes back down is another CT Scan but with contrast. Contrast makes your insides glow during a CT Scan but it can be hard on the kidneys.
As for the diet change... again! I now have to be careful about the amount of calcium I consume. I'm taking in too much for my kidneys to process and that's where the stones come in. So calcium is limited and potassium is still limited because my kidneys can't process that very well either. The biggest change with watching my calcium is going to be my Milk intake. And anyone who knows me, knows I can easily drink a gallon of milk a day on my own. Love milk. I also have to be more vigilant that I'm still eating enough protein and fat, since a big portion of the fat and protein in my diet was coming from milk. I only drink whole milk. Less milk, cheese, broccoli, potatoes...😭 They keep limiting my favorite things!
Overall my 5 year check up went well. Lungs are looking stable and kidneys, well, they are still a work in progress. There maybe a time in my life where a kidney transplant is necessary because my kidneys will stop working all together. Right now, I have stage 3 kidney failure, they are working at about 40% of normal. A possible kidney transplant is something I've known that I might need since I had my lung transplant. Unfortunately they do tend to go hand in hand. Many lung transplant patients also have had a kidney transplant. It's just the way those magical antirejection medications work.
But for now me and my broken and recycled parts are doing just fine. Going back to work part time and trying to enjoy the rest of the summer. Next up, more possible skin cancer, I have an appointment to get that checked out soon! The ride never ends!