Sunday, February 01, 2015

Wild Medicine

I was feeling really crappy last weekend. The cold I first had symptoms on the 17th of January had finally caught onto my chest. My white cells were near 20K and my FEV1 was at an all time low of 22%.  I'm happy to report my white cells today are 8.9K, which is normal.

Wednesday, January 28, I was admitted to the hospital in Sacramento. They started my IV antibiotics and everything was going ok until my kidneys spiked a high creatinine score of 1.79 on Friday morning. We had to discontinue the antibiotics, thinking we would resume them on Monday morning.

My creatinine ended up going down to an acceptable level by Saturday evening, 1.4, so we were able to restart the antibiotics.

In the mean time, on Friday night, I had a scan on my kidneys to make sure they were ok. And the ultrasound came back good. Of course my 24 hour creatinine clearance test was awful, since I was on antibiotics and raising my creatinine when I did it. This is a 24 hour urine collection which showed my kidneys functioning at 59% of normal, which is stage III kidney disease. Nothing new but not exactly stellar news.

Let me back up to January 21 when I saw Stanford. They were ready to list me! They were going to take my case to the team the following Monday and ask that I be put on the double lung transplant list. BUT then I got a call on Thursday, January 22 saying no, they cannot list me until they figure out if my heart is failing. FAILING? My ejection fraction (EF) was 38% on my echocardiogram.

There are a few things to know about echocardiograms and end stage lung disease. First of all, an EF can be raised with the help of blood pressure type medications under the direction of a cardiologist. All of these drugs (a 4 combo) are nephrotoxic (kidney disease causing). So this is not a good option for me.

Also, echocardiograms on end stage lung disease patients are notoriously unreliable. Some transplant centers don't even use them at all. The bottom line is, we need to find out if my heart is failing or not. There is an MRI of the heart (MUGA scan) which is non-invasive. Now if that doesn't turn up good results the last resort is an angiogram, or right and left heart catheterization where they enter balloon dilations into the heart and test pressures. Unfortunately, this uses nephrotoxic dye!

BUT Stanford has talked to my pulmonary doctor and my doctor agrees that there is another way to have the angiogram with another medium, that is NOT nephrotoxic and that is safe for the kidneys and we should definitely use that one.

The reason we want to save the heart so bad and find out it is a good heart is because if you get listed for a double lung and heart transplant your waiting list score is driven by your heart disease (which I have very little, if none) and not by your lung disease (which I have a lot and could score decently high). So I could potentially end up dying from lung failure, waiting for a double lung heart transplant if that is the route we have to take.

So let's get back to this hospital stay and this weekend. I get a text on Friday from my clinic nurse that says "don't panic but they found something on your CT scan too, and I need to call you."  So I panicked. Well, what they found was a mass in my right breast, and it's been there for 17 years, that I know of and hasn't changed and my GYN has never said anything about testing it and my mamogram never said anything about it last year..... so they scheduled an ultrasound to figure out what this mass is. All I could see was a big black dot on the screen and she kept measuring it and taking pictures and I have not seen the report on that one yet. So I'm not sure if they will do further testing but it's all going to be moot b/c if I had breast cancer it would have killed me by now.

Back to this morning, The nurse started my antibiotics this morning and a half hour later she comes back in to say that she has to stop them immediately. I ask her why, and she said my doctor has been on the phone with Stanford and they want me off the antibiotics because they are transferring me to Stanford. Now I have speculated with some other doctors that have meandered into my room this morning as to why they want me off the antibiotics and they think maybe it's because they want to get the heart tests done and then put me on the list but not while I'm receiving antibiotics for an exacerbation. To be honest, I feel quite a bit better, but I can't say my lung function is doing better. I am supposed to get that tested Monday afternoon, but I could be riding to Stanford by then. Who knows!

Another monkey wrench this morning is my hemoglobin. It's low. Really low. 7.7 low. There are two treatment options. One is a blood transfusion. Now with me getting so close to transplant they really do not want me to receive blood products because that can mess up all sorts of antibody types in my blood for good lung matches. There is this other shot called Procrit. It stimulates my own bone marrow to produce more red blood cells and raise my hemoglobin. I guess my iron is low as well. Everything is low b/c they keep drawing blood to find out what is high and what is low! It's  vicious cycle.

Well, I think that about sums up my last five days. I'll update when I know about my transfer to Stanford. I hope they have big rooms. I have a lot of luggage.

1 comment:

Christina said...

Wow! My goodness! You have a lot going on. I sure hope you get transferred to Stanford and get on the transplant list. That sure would be good news. Either way, I hope you feel better and al of your metrics get better soon! Tina