UCSD trip

Some people are wondering what happened at my trip yesterday to see Dr. Yung at UCSD. Well I went there with a lot of positive feelings and excited in hopes to having some great news about starting the process of getting on the transplant list and/or maybe a new medicine that might help slow the process of the fibrosis growing all over my lungs. Instead Mike and I both walked out teary eyed. Me more so than him because he NEEDS to be strong when I am not.

I guess you can say Dr. Yung doesn’t have the best side manners. If anyone has seen any episodes of House, well lets just say I almost felt like I was living one of those shows. Anything that I thought would possibly be positive he changed it to a negative. For example.

1.I thought the fact that me feeling so much better on oxygen was a good thing. He said that the fact that I comment that I feel much better on O2 scares him because that means that my body “really” needs it and it not getting it. Well no shit Sherlock, I’ve been complaining of windedness for 4 years now and no one ever wanted to put me on it. He did say that the best medicine for me at the current time is oxygen and that I should wear it all the time or much as I possibly can stand it because it is only hurting my lungs and heart if I don’t wear it and they are working in overdrive to get my body the oxygen it needs. I told him I don’t think at this point I can wear it anymore than I already do. I pretty much wear it 15 out of the 24 hours a day. The few hours I don’t wear it is at work for my 3 hours when I’m just sitting at a desk and when I take a nap or sleep. I start with it on but wake up with it off. So I must take it off in my sleep.

2.He was very clear on the fact that Scleroderma isn’t curable that everything researchers have tried to get to work hasn’t work and so people do die with the disease. Everyone is different depending on how severe they have it but once it affects your organs such as mine, you pretty much will die from it. I’ve never have had a doctor tell me such horrible news, or simply be so blunt about it. He pretty told me that “Look there is medicine that helps some (20% to be exact) but odds are against you, and unless by some weird circumstance that I get hit by a car or lightening you will die from this. It just a matter of when.” Well again I already new that. My family and I have already talked and discussed what I want to happen and how to do things after I’m gone, but to stay positive and not to focus on my death because who knows it could be tomorrow or it could be ten years from now.

3. My options now are to one do nothing and just keep on trucking like I have been and hope that I live a long life or get a miracle. Or two to start another round of chemo. and prednisone and see if I tolerate it better this time, which I have to figure out if I can tolerate it anyhow because theses medicines are something that I will be on for the rest of my life after a transplant anyhow. Or another type of medicine if I have pulmonary hypertension, but first I need to get another echo cardiogram done to wean out pulmonary hypertension. In the past I have had echo cardiograms and everything has come back normal, but he was worried because my heart was racing faster when he checked it but that was after he gave me all this bad news. Hello I think anyone’s heart would be racing.

4. Regarding a transplant he wants to hold off on that first because he wants to see if I one improve with the medicines (which only 20% do) and also to see if I tolerate them better now since they are 2 or the 3 pills I will be taking after a transplant for the rest of my life. Also he said 80% of people are turned down for lungs for some reason or another. One of the biggest ones is weight. He said they can’t be more than 20% over their ideal body weight, which isn’t a big deal now but if I get put on prednisone again it will be because for anyone who doesn’t know this, it’s a steroid and most people gain weight. The last time I was on it I gained 40 pounds in 2 months. I’ve lost 20 of those pounds but am still trying to lose the extra 20 that I gained from the last time so weight isn’t too much of a problem now but it sure will be if I have to take that fucking steroid pill again. Then he gave out other percentages and what not. He said with a transplant 1 out of 5 die in the first year. After that 50% die within the first 5 years and from there 70% die within 7-10 yrs.

So by reading this you can tell one he wasn’t the nicest guy. Two he loves his %’s (I used to until I met him), three he didn’t really talk highly about oxygen, medicine or transplants. Three he didn’t learn in his schooling about teaching the patient to stay positive and that that is a huge help in someone recovery or health in general.

Mike and I have had a day to sort of absorb what he told us, and we are hoping that once he reads my medical records and sees that I wont take death as an often that he will lighten up a bit. Maybe he wont, maybe he’s the type that just lays it all out on the floor for you and that’s it. I mean I really didn’t go to him to be my new friend, I went to him to give me the best medical advice I could get and supposedly he’s the man so I guess I’ll just have to get used to it. I’ve just never have had a doctor be so straight forward about it in the past. I mean now if I even shed a tear to Dr. Shah my other pulmonary doctor, he’ll crack a joke and always make me feel better about myself. Maybe he’s not the best medical doctor around but at least when I leave his office I feel some sort of hope for me and am not emotionally beat up. Sadly I have to see Dr. Yung no matter what because he is the “lung transplant guy.” He is the one that does them and he’s the one that denies “80% of the people looking to get new lungs” as he put it to us yesterday. So I’ll have to learn to toughen up more I guess, try to stay positive even if he makes it hard to do and not let him get my hopes down.

I am going to try the medicines, even though I may not tolerate them again and hope to not get sick and tired on them all the time like before, but I am also going to pray, hope, wish whatever I can that this time I will be the 20% that does improve and that, that will get put into remission a bit longer than I was before. And I am going to go back to counting my calories like I did before when I lost my 20 pounds and suck it up. It’s better to lose what I can now that to be trying when I’m also trying to get on the transplant list. I’m also going to keep living my life, if I only have 6 months to 3 years left like he mentioned then I’m not going to live the rest of my life in a bubble inside. Hells know I’m going to enjoy it and just pray for a miracle to happen. I do believe in miracles and hopefully I haven’t pissed God off to much for him not to give me one….