Thursday, September 4, 2014

I bet you are all wondering.... what happened?

Well it was quite a bit of drama and stress. We went to see our normal OB and he kept contradicting himself, telling me not to have surgery but that he will do surgery anyway, he spent maybe 15 minutes with us, didn't care that my belly was so huge, and didn't even ask to touch it to see if I was just fat or it was really swelling.

Ken and I left the office very angry and confused. We had no idea what to do, no plan, and we were running out of time. My insurance expires on my birthday and we needed the surgery before then.

So I called EVERY OB in my insurance network (well maybe not every, but it felt like it) and picked the one who could get me in the fastest. His name is Dr Grabowski, and he is a Saint.

Quite Literally. A Saint.

We went to the appointment, and I told him I want a hysterectomy because I want to be cured of my horrible endometriosis. He said I'm sorry but I will not do that for you. I'm thinking "WHat?!" and it turns out I wasn't just thinking it, I said it. and I cried, and I was mad and probably not a very fun patient for him to see. Usually I am calm, straight to the point, but as my husband puts it, I flood the Dr with all of my information and then they work with me to come to a decision. Easy right?


He kept saying that because of the amount of swelling I have- which he went and actually touched and examined my belly( excellent sign of a good Dr)- and said that he believed my endometriosis has become extremely aggressive and is overgrowing. Turns out he is right, you can see some implants on my skin. This picture below is an implant growing under my skin on my chest. I have several more along my belly down to my thighs. Yep, my endo has gotten seriously out of hand.

So, this saintly Doctor who I will forever be grateful too explained over and over and over why having a hysterectomy at this tie was not a safe idea. He said maybe we will have to go there eventually, but right now, with the extent of the craziness of my endo, he does not have a team of specialists on standby to help if the endo has compromised (as in holy cow overgrown and covered) my bladder, my intestines, my lungs. He said that having the surgery might not even fix the problem because I am so young and I will still need a small amount of estrogen whether I take it naturally or do hormone replacement therapy, but he said " I believe it will grow back"

WHat?! It's going to grow back! And that's not all. He also said I have a high risk of dying or poor quality of life after this surgery, that it may cause more problems that the ones it is supposed to solve.  He kept telling me, "I do not want to hurt you or see you suffer more". (I know, total Saint right?) Over and over again he kept being kind and comforting me telling me he doesn't want my life to be worse. He wants me better.

Then he told me that since I am so young, there is a high risk of complications as mentioned above, infection bleeding out, and if he messed with the varicose veins they would just grow back larger in a different vein line because my body is demanding that blood flow. So of course I'm confused and angry because the last doctor didn't say any of these things, he was just going to do the surgery! I'm so glad we decided to hunt for a second opinion!

So I asked then why is my belly so huge. He said it's inflammation from the endometriosis on your organs, and surgery won't fix that, nothing will really fix it unless....

and here is where he brought in safer options. He said we could try a shot that some women use for birth control, but it is very effective in shrinking down the endometriosis and hopefully killing some of it off. The other option would be the Lupron shot which I have done before, but that caused severe bone pain and all kinds of weird symptoms so if this shot I'm on doesn't work and we can't find any other alternatives, we will try the Lupron again. It brought my endo from a stage 4 to a stage 1. So clearly it's effective.

So we decided the shot, but I told him I don't want to be in pain, I want this fixed, not a bandaid. And he agreed. He said I can only do so much, your case is complex and I can help with this safer option of the shot and I am going to send you to the best (and I'm pretty sure only) Pelvic pain specialist in Arizona. My OB said this man will know more, probably have more ideas on how to help and can really get me the relief I need.

I called the specialist for an appointment... they didn't have one until the end of November! so I called my OB back and he personally called and spoke to the specialist about my case and said you need to see her as soon as possible! Can you believe that?! This Man is AMAZING! After me freaking out and being mad and afraid and him spending an HOUR AND A HALF talking with me and my husband about options and safety and the reasons why and why not, he then goes and makes a personal call to get me into this amazing specialist!

He literally is a Saint. I am so grateful we went to him, and that he spent that long trying to help me understand the risks and face the fact that I might not get better from this, and that surgery might make things worse. It was so hard to deal with. I felt like I had lost my baby all over again and that there was no hope for getting rid of this stupid disease.

But he never made me feel there wasn't hope, it was just that my false idea that surgery would fix everything ( because it has for some women) was wrong. Because my body is not like most peoples bodies. I'm very young. There are more complications and concerns to deal with. And that was just crushing.

But we went home, prayed about it, I took a nap, my husband talked to me about the shot being the safest thing and it won't interfere with what the specialist does (our OB said it may even help him if the endo growth is calmed down). And then my awesome Daddy came and looked through the package insert online with me and explained all the risks, side effects, and safety of the drug.

My dad used to be a pharmaceutical rep so he knows so much about these things! And he said it is the safest option and would most likely be successful but if not, it's not going to hurt or make me really sick like the Lupron shot did. I might get fat, but he and the OB said that getting fat on this shot is a choice. It makes you think you are eating for 2 so you have to make a plan to not over eat and try and get some exercise and then I won't get fat. So that was nice, because other medicines I've taken to try and help have just made me swell or made me fat, its a side effect in fertility medicines and its a dumb one.

So after praying and thinking and sleeping on it, we decided to get the shot the next day. I was put in an emergency placement at the specialists (which doesn't feel like an emergency quick spot- Sept 17th) and then we will talk more about what to do.

Also my awesome OB prescribed a slow release naproxen which is an anti inflammatory. Taking that along with eating right portions and having protein shakes to keep the hunger away, I've actually lost 10 pounds. Now my belly looks like this.

It still hurts and I'm not better, but it's a start, a good, safe start. I'm so grateful for this amazing OB. I made him a special card to express how amazing he was and how grateful I was for his patience and compassion. I think he could clearly see as I was sobbing on the table that my hope of getting better soon was shattered and he needed to spend the extra time with me so I wasn't confused and I could be confident moving forward.

I also feel like I owe him my life. Can you imagine if we had let that other OB just do surgery without being told my case is complicated and I have higher risks than the average hysterectomy patient?

I've learned through all this that the Lord has a plan. It's clearly not my plan, but that's a good thing because my plan may have had me going to heaven too soon on an operating table by an OB who can't make up his mind. I truly believe that the Lord watches over us in ways we can't even understand. I do not believe it was just a coincidence that this OB had the closest opening. I am so grateful to be able to pray to our Father in Heaven and ask for guidance and direction and comfort. And I am so grateful for a wonderful husband who also prayed about it and then we came to the conclusion together that we should try the safest thing first.

Life is so hard. I know it's hard for everyone, but don't give up! Know you are special and there is a reason things happen. There is a loving Father in Heaven protecting and watching over you. Our Savior Jesus Christ is there to comfort us and walk our trials with us. He does not take them away, but he does not leave us alone. It feels to me as if I am walking along an endless beach with the Savior holding my hand, keeping me steady, guiding me around the rocks and tide pools, always a constant companion at my side. He's there for you too. All you have to do is reach out and ask.

So my life isn't perfect and I have pain. Ok. I can do this. And whatever difficulty you are facing, don't worry, you can do it. I wonder what new plans and opportunities are on the horizon, but I'm just curious like that. And I know that with the Lord leading me and the Savior at my side, it will be a wonderful adventure full of peace, despite any pain I may have to endure. It will all be worth it.

No comments:

Post a Comment