Thursday, February 26, 2015

Health Update February 26, 2015

I sent a little email out to some friends and family. I thought I would post it here as well. Enjoy!

Hello Friends and Family,

As you know, I started the process for evaluation for a double lung transplant at Stanford Hospital in Palo Alto, CA in October 2013.  At my appointment in January this year, they decided I was in the transplant window. This last month has been a whirlwind of appointments and tests to complete the evaluation process and I’m happy to report I have passed all the tests!

I had an appointment at Stanford yesterday, February 25, and they are going to take my case to the team on Monday, March 2. This is when the surgeons, nurses, doctors, and a variety of other experts I’ve gotten to know over the last 18 months will decide if I’m a worthy candidate for a double lung transplant. If it’s a go, they will do the insurance approval process and hopefully I will be actively listed and waiting for new lungs by the middle of March. 

The average wait time in 9 months, but I know people that have waited longer and some that have waited shorter. I will be assigned a Lung Allocation Score and this is the score that places me in line on the list according to severity of my disease state. The numbers range from 0-100 and fluctuate based on my current condition. To take a guess, an average number for my disease state might be in the low 30’s. The higher the number, the higher on the list I go. However it doesn’t matter how high your number is if there are no lungs available for my size, blood type, and antibody screening, and so many other matching characteristics that come into play. 

I am very excited the team will be talking about me on Monday. My lung function was stable at my appointment yesterday at 0.78 Liters which is the equivalent of about 25% function.  

Think pink lungs!

Thursday, February 05, 2015


Things here at Sutter Memorial have stabilized. There is no more need to transfer me to Stanford during this hospital admission. I will be here at Sutter until Thursday, the 12th.

I have been taken off my second antibiotic today and will just be on one antibiotic to try and keep the kidneys and hemoglobin happy for the next 7 days. My hbg today was down from 2 days ago, but still a respectable 9.4.  My CRT (kidney function) is rising, slowly, 1.27 today. But that's a decent number for me.

I had a repeat echocardiogram last night and today the results were great! My ejection fraction was 55%, which I think is an acceptable number to move forward with transplant at Stanford. I still have to get a right heart cath, which they did not require on all patients before, but will require on all patients moving forward starting this month.

My doc wants me to do all future hospitalizations at Stanford, so that will be a treat and a half. Hopefully the next time I get sick the kids will be out of school and they can do some sight seeing and see me every day. That would be fun.

The radiology report came back on the lump in my breast and it's "not likely to be cancer". duh. It's been there for two decades. It's most likely a fibroadenoma, which is harmless.  So I will need a fine needle aspiration sometime soon to rule cancer out, to keep Stanford happy.

I'm not clear if I will need a MUGA scan on the heart, but that can be done locally in Sacramento if need be.

I'm feeling a little better this afternoon but that could be the Ultram talking. I came back from a trip downstairs (to do the fine needle aspiration, then to find out they don't do breast cysts at this hospital!) so I came back and I started getting a headache. I was nauseated too, from the IV meds, so I took some Ultram and compazine. Then 90 minutes later, no relief from the headache. Finally dawned on me, I turned around and my oxygen wasn't turned on! As soon as the o2 was turned back on, the headache disappeared. Whew!

I know so many people have so many questions and I hope this blog answers most of them. It's hard to get back to all my friends online individually so I will tweet this link out for your viewing pleasure.

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.