Thank You!

I am really touched by all the interest and feedback I am getting about the blog.  Thank You! 

First, please feel free to ask me any questions you would like.  I am not shy in talking about it, in fact it helps me to discuss it openly.  My disease and then the transplant itself are complicated, confusing things.  It has taken quite a while just for me to get my head wrapped around it, so I am sure there are plenty of questions out there.

Secondly, based on some emails and texts I've gotten, apparently I am not writing fast enough :)  Be patient with me, I am new to blogging and a bit technically challenged by this website.  I have a few posts in draft that aren't quite done yet, but wanted to give you an update since I've had several doctors appointments the last few days.

Dr. Crespo was not surprised that my ankles and feet were swelling.  Apparently edema (water retention) is not uncommon in someone with severe pulmonary hypertension (PH) like me.  She conferred with my cardiologist (Dr. Mathier, whom I have nothing but wonderful things to say about) and they have put me on a diuretic; I guess that is standard operating procedures (SOP).  But I also read, because I can't help myself, that it can also be caused by vasodilators.  I take Revatio for my PH, and they just doubled the dose (which is kinda unheard of) while I was in the hospital, so maybe this is a side effect.  I am going to email Dr. Crespo and ask her about this.  Interesting fact about Revatio...when I first started taking it, it was an experimental drug brand new to those with PAH.  We had to get it from the company who made it, so my first few months of taking it was a handful of samples Dr. Chaney gave me.  Now you can get it at the pharmacy.  But it is really expensive.  Without insurance, a 30 day supply of the regular dose is thousands of dollars, with our insurance it costs $500.  Thankful for my wonderful BCBS Federal policy!  And yes, unfortunately, there is a big difference between a regular, or teacher, etc. BCBS policy and one through the federal government.  It is a shame.

Isn't that cool, that I can just email my doctor?  Dr. de Andrade at UAB was like that too.  I'll never forget one time I was sitting in the chair getting a chemo treatment back in Panama City and Dr. de Andrade's office was supposed to have faxed them an updated prescription for my chemo, but I had just found out that Dr. Mahmood had not received it.  So hooked up in my chair, I emailed Dr. de Andrade from my I-phone.  Within 5 minutes (and I'm not exaggerating) one of the nurses came back and said Tonya from de Andrade's office just called, apologized and faxed us the script.  He always responded to my emails within 24 hours, even when he was on vacation.  He always calmed me and reassured me.  I even had his cell phone number.  He's the one that told me a little over two years ago that I would most certainly have to have a double lung transplant to keep living.

When we were talking about my swollen feet yesterday, Dr. Crespo kinda gave me this look, and said "you have my email right", and it wasn't a question.  See, we had called my lung transplant coordinator Tuesday morning with the news about my feet and left a message.  Actually that's the protocol we've been given.  Anything that happens to me we are to call the coordinator ASAP; if i have a fever over 100 degrees, if I'm nauseous, etc., even if I have some issue unrelated to my disease, all my medical care and any drugs I am given now gets signed off by them.  So like I said before, Tuesday morning we called and left a message with my coordinator and then that afternoon I went into rehab.  I told them about my feet too, because they always ask you what has changed since they last saw you.  Well they were instantly concerned, so they tried hunting down my coordinator, and then ended up paging Dr. Crespo (so that's how she had heard about it...from my rehab people).  Tuesday is new transplant patient evaluation day, so we weren't surprised my coordinator, or actually all the coordinators weren't in there office.  They see all new patients, and then that afternoon is the panel of doctors.  They go over each case and decide who is an acceptable candidate or not.  Good Luck to all the new patients I met on Tuesday!

So anyway, what preceded the statement about me having her email was a comment about how she had heard about this from rehab, and not from my coordinator, or from me.  We got the hint...don't go through the front desk, don't even go through the coordinator, email Crespo and courtesy copy or call the coordinator :)

I really do like Dr. Crespo.  She knows a lot about my disease, in fact, I'm pretty sure she is the one who handles all the Scleroderma transplant people.  I am lucky to have her.  Within a few minutes of me getting admitted to the hospital a few weeks ago, she was in my room talking to me.  I knew they had paged her, but boy she was quick.  I honestly don't think that woman sleeps.  Plus I saw her sometimes twice a day when I was in there.  I know she will be one of the major players to get me through this, and I look forward to seeing her face over my bed when I come out on the other side of the surgery.

For a year or so now I've kept my medications down to 4 daily, plus a little steroid and Flexiril when I needed it, but yesterday I gained 2 more.  My diuretic and Mucinex!  My sinuses are giving me hell.  I think it is a combination of the new environment (it is super dry up here compared to FL and I am sure there are different allergens in the air), and the fact my oxygen requirements have increased quite a bit.  If you get a chance, try a cannula with the O2 on 8 L.  Give it a whirl, it will feel like your brains are being blown out the backside of your head.  I don't notice it anymore because that oxygen tastes so so sweet to the rest of my body, but apparently my poor sinuses are suffering.

We have a humidifier on my oxygen concentrator that is suppose to help, so the O2 goes through it before it comes down the tube to me, and we also purchased a humidifier for the apartment, but neither have relieved me...although I am sure they have helped.  My nose is always a little bloody now, and its been really hard to find a comfortable position to sleep in so that I can breathe.  I've been sleeping on the couch mostly.  Dr. Crespo thinks the Mucinex will help my sinuses, and I am also to rinse them daily with saline.  I am happy to report I took a dose of Mucinex last night, and I actually slept the night through in my very own bed...something my husband was extremely happy about :)

Rehab today was great.  I really do like getting out and being with people that are in similar situations as I am.  And I feel comfortable there knowing I am monitored while doing physical activity.  I think I am in much better shape that they thought for someone with my disease, because they already increased my reps on all my exercises, and my weights for some.  I did two walks of 200 ft today on 8L of O2 and my oxygen saturation didn't drop below 95....that is actually amazing for me, I usually fall into the 80's even with O2.  But my heart rate was 126 after walking 200 ft...sad huh.  My poor heart has to work so hard to get oxygen to all the organs in my body.  But it is the fact that I have such a good heart that has gotten me this far!

I also met a lady with Scleroderma today.  She has Raynauds too and saw me with my gloves and my little chemical hand warmers.  We talked about how the little hand warmers really help me, so I think I am going to bring some in next week for her to try.  We have an abundance since we ordered in bulk last time, and I inherited the ones my mom had leftover.  It can be a real issue since if your hands aren't warm (Raynauds actually causes the capillaries in your extremities to kind of shut down, so lack of blood flow = cold) they can't get a pulse-ox read on you, so then they can't tell if my O2 levels are OK.  They usually have to put a sensor on my forehead and then I get to wear a very stylish headband to keep it on...but today I brought gloves and put the little hot packs in side of them.  I didn't have to wear my head garb, just had to pull a finger out of my glove so they could get a reading from time to time.

More Later...