Time and perspective....

Seven weeks ago yesterday, I met with my family practice physician for my "yearly" physical. I had been having some trouble with Gi issues and increased tiredness that we both assumed were left over from a bad bout of flu in February along with typical Flolan side effects. But, to be thorough, she decided to take the time to do a complete physical so all types of blood tests, scans, collections, etc were done. All tests came back without any remarkable concerns.

Seven weeks ago today I did an exercize echo at the Med Center that showed that my PH was progressing. Rod and I had a discussion with my PH specialist about gathering information on getting registered for a lung transplant.

Three weeks ago today I met with GI specialist at the Med Center to discuss the increasing difficulty I was having with weakness, tiredness, vomitting and being unable to eat anything other than banana popsicles and chicken broth. It was decided that the following Thursday I would have an endoscope and colonostomy to try and determine the cause.

Two weeks ago today I was in the hospital. I missed the retirement party for two friends and the colonoscopy and endoscope were both cancelled due to the preliminary diagnosis of Addison's Disease.

One week ago today, I forgot it was my 51st birthday. My husband and sons sent me beautiful long stemmed red roses that I received at home in my pajamas from a floral delivery guy that will probably never stop at our door again.

One week ago today, I had a ct scan as a follow-up to the results of the last test that was done to determine if I did indeed have Addison's, and if so, if it was primary or secondary. Instead, I found out that I have Panhypopituitaryism which means that I have no pituitary. I found out that with the right balance of medicines I will begin to feel much better.

Today, I woke up, cooked myself toast and an egg for breakfast. I ate all of it. I cleaned up the kitchen including unloading and loading the dishwasher. I then went with my sister to visit Nick's condo to see how the new floor installation was going. I then went to lunch with my sister. I ordered Fettinicci Alfredo with some chicken on top. I ate some of it. I came home watched the recorded "All my Children," read a couple of chapters in a book and took a short rest. I also went to dinner with Rod, Nick and Chris and then went to see the opening night showing of the new Pirates of the Caribbean. I got home at 11:00 pm, mixed my Flolan medicine, switched cassettes, took my medicine and went to bed at 11:45 pm.

Seven weeks....a small fraction of time....a lifetime.....

"Dear Heavenly Father, I thank you for two special gifts that you have bestowed upon me....time and perspective....amen."

Much love,

Annette

How can not blogging for 4 days feel like an eternity?

Hello everyone!! Every day I tell myself that, "Today will be the day that I take/have the time to get back to that crazy techno-blog thingie and tell everyone hello and share whatever it is I'm suppose to be sharing. (I'm pretty sure any past and present difficulties in the GI body section would not make for good "blogging" material. OK, now I'm really grossed out by what I just wrote. But, if you are reading this, then you know me...so...). Well, a friend, who will go unnamed (tammy) politely told me that I need to update my blog. I think she actually said, "Lady! You've got to update your blog!!!!" So, here I am.

The last time we "met" Rod and I were heading off to a movie and I had just received a phone call from this amazingly smart and busy specialist on a Friday night. She shared that the last blood test was in that had been sent to the Mayo Clinic. That test was done to make the final determination of what was going on that caused me to get so sick. I do not have Addison's Disease. I also do not have a pituitary gland. The actual diagnosis is: Panhypopituitaryism. I started "googling" Panhypopituitaryism and the definition is horrible and quite frankly it doesn't really say what's going on with me. So, I'm going to do my own. Are you ready? Definition of "Panhypopituitaryism" by Annette Markin.

I don't have a pituitary gland. I had one at one time or I would have been unable to get pregnant with the boys. If you don't have a pituitary (that now and for ever-more shall be shortened to "pit" because I hate trying to keep spelling it correctly), anyway, if you don't have a pit you feel rotten. You don't have enough cortisol, aldosterone and thyroid. Cortisol is kind of a stress hormone, aldosterone helps regulate salt and water and thyroid regulates metabolism. So, if you don't have those (yes, Rod came in and filled in with the really big words), basically your whole system is off-kilter. So, since my system was completely off, everything went haywire like, being really tired, having trouble eating, muscle weakness, vomiting, general GI stuff. As some of you can tell, many of those symptoms are also ones that we see with Pulmonary Hypertension and are also side effects of Flolan. So, now, so much of this makes sense. I could have had trouble with "Mr. Pit." for quite awhile and we all kept assuming it was the PH and/or the Flolan.

So, now what happens? DRUGS!!!!!! Drugs (the prescription kind....calm down everyone...) have been MY friend ever since I was diagnosed with PH. Now that we know what else has been going on, all we have to do is replace all of the "stuff" that I have not had for however long. So, now, for the first time in at least 2-3 months, I'm getting steroids, some thyroid, some potassium and a few other things. I'm not quite leveled out with the mix yet, but that is ok, it will take a few months. After feeling like I have for this long, I'm ok with giving things some time. Don't get me wrong though. Even though we still have to "play around" with the levels and such, I still feel better than I have in YEARS!! I actually ironed Rod a shirt for work last night and today for work tomorrow! That may seem simple and many of you may be wondering why I don't just send the shirts out. The deal is, since being diagnosed with PH, there are so many things that I can no longer do around the house and am unable to help Rod with chores. Ironing a shirt for Rod for work every day was the one thing that I could still do for him. Simple or not, it was and is important to me.

OK. That is my new novel. Hopefully if you decided to read this incredibly long thing, you either had a lot of coffee, patience and/or nice, long breaks. Thank you all for your time, love and friendship. This has been and continues to be a very humbling experience. I mean, I even heard from Jenny W. who I use to teach with who has even moved to another city !!(maybe state too, I can never remember the difference between Sioux and South Sioux...)

All my love to all of you.
Annette

Houston, we have an answer!!!!!

Hello out there!! Well, I have a little bit of time before Rod and I head off to a movie and thought I'd do a quick blog. I've been trying to find a nice clump of time to say hello and bring you all up to speed. But, things just keep changing and then I'll feel good and get so excited because I feel good or can eat something and...POOF! times up! So, instead of trying to conquere the blog world, I decided to just drop in, tell you the latest info, go to the movie and write again later. What a plan!! I almost sound like some grown up mature woman!! But, if you know me, that's just a little over the top so don't worry, it won't last.
First let me share what I just heard about my latest round of tests. I am no longer an Addison's patient!! Darn it, just when I was getting all excited, feeling like I was going to get an award for having two rare diseases! Oh well, what I do have is hypopituitarism. In fact, I don't even have a pituitay at all. I just got off the phone with the specialist (yes at 6:30 on a Friday evening!!) For whatever reason, something happened to my pituitary gland at some point in my life (after the boys were born, otherwise there would be no boys). So, instead of the endocrine glands that sit on top of my kidneys are not working because
they are damaged, they are not working because I have no pituitary gland to make those others work.
OK, that's it, I've got to go. Bottom line is the drugs will change a bit, I'll still have to get an extra alert bracelet but I'm still going to and do feel great!
Talk to you later!
love
Annette

Annette is Home!!

Greetings from the Markin home--and is it ever good to be home. I am Mary Morrissey, a friend of Annette's, and am over today keeping her comapany....or should I say, she is keeping me company :) So I will attempt to fill you in. Annette got home from the hospital on Sunday around 2:00, and what a pleasant Mother's Day Gift! Officially, she has been diagnosed with Addison's Disease.

Addison's disease is an endocrine or hormonal disorder that occurs in all age groups and afflicts men and women equally. The disease is characterized by weight loss, muscle weakness, fatigue, low blood pressure, and sometimes darkening of the skin in both exposed and nonexposed parts of the body.

Addison's disease occurs when the adrenal glands do not produce enough of the hormone cortisol and, in some cases, the hormone aldosterone. The disease is also called adrenal insufficiency, or hypocortisolism.

These symptoms about sum it up for what Annette has gone through since last September. She is taking steroids with much success and feels human again!

Today we have been chatting away most of the day, making a few phone calls, and Annette was able to help me with my Ebay problem!! I do believe that day by day she will be getting her strentgh back and will be able get back to her normal routines. From what I understand, she was quite the patient at UMNC, to have 2 rare diseases at one time! She had quite a variety of Doctors and Nurses in and out at all hours of the day. The past several days have been hectic and even very scary at times, but she is definantely on the right track!

She would like to say thank you again for all of your wonderful prayers and well wishes while in the hospital and appreciate your kind words of encouragement for the future.
Sincerely,
Annette and Mary

I'M BAAAAAAACK!!!!!!!!!!

Hello to the most supporting, amazing, prayful, caring, motivating, loving group of people, that I feel have shown God that there are quite a few people down here who "get it! I know He is so proud of of what He has created in this group that are here reading or writing or just contemplating their navals, but they are here!

I don't even know where to start because I am just know wrapping my head around how critically sick I was when I was delivered to room 88876 bed two at the Nebraska Medical Center, Clarkson Tower in a double wide weelchair on Tuesday late afternoon May 7th, 2007.....................
...................................

Wow! Those sentences feel like they were written a decade ago by a woman who used to live close to me. I see the date and I have a vague memory of what was going on at that moment. The problem is, I'm not so sure if I can accurately recount what has happened between 5/11/07 at 6:16 am and now, Sunday May 12th at 10:43 a.m. I just know I'm here in the hospital, the doctor is outside my door getting ready to come in here and tell me to get out of here. So I will, and I'll fill you in later.
love
Annette
And, Oh, by the way, thanks for the prayers, they have just saved my life, actually, given it back to me.
annette

Update - 10 May 2007

Hello all,

This is Nick Markin (Annette's son) writing today as she is too tired right now. She had a bit of a rough night trying to sleep, probably from the steroids that she is taking, but she is resting up today. She is having the steroid amount reduced today and the goal is to get her on the best dose for her without it being too much. We did not get that scope done today as we planned, but that is okay. It is very possible that we won't have to do it now that we have determined her adrenals are responsible for a lot of what is going on, so if she can get better, then we will stick with the steroids (and all the other meds too, flolan and the lot)

She says hello to all and she hopes to be feeling well enough to be typing soon.

Update - Annette 5-9-2007

Hi, All.
this is actually Kathleen (Annette's sister) who is posting this, so I'm gonna do my best to get this straight. Annette wanted you all kept informed of what's going on.

Update on Annette: What they've found is that her adrenal glands are not working...and that has a name: Addison's disease. The docs are trying to figure out what has caused it, but in the meantime they've put her steriods and some other stuff that are all produced by the adrenal glands and have given her an IV to bring her electrolytes up where they should be. Sodium was the last one to get up to par, and that's much improved today.

She looks sooooo much better than she did over the weekend -- a bit of a sparkle to her eyes and color much improved. she's even been on-the-spot with a couple of comebacks and jokes :) The docs are going to go ahead with the scope and other tests tomorrow as planned to try to figure out why she's been unable to eat and I believe they are going to do a (another?) CAT scan to check on her pituitary glad to see what's up with that, if anything. So, she will be here at least tomorrow yet.

Thanks for all the thoughts and prayers that have been coming her way....much appreciated and are the difference makers! Probably the next posting you get will be directly from her own fingers, but feel free to send me an e-mail and ask questions if you have them: kathie_starkweather@hotmail.com

WELL CRAP!

I had such good intentions of blogging on Sunday to tell you about the actual graduation ceremony. But, I was really pooped. Then I had such good intentions to blog on Monday, but I decided I better go in and see a family practice doc because I was having real difficulty urinating to the point that it was majorly uncomfortable. So, I went there and they decided my electrolytes were all wacky and they were so wacky I was immediately checked into the hopital. So, here I am! I'm at UNMC in the Clarkson tower.We've learned one thing. Evidently if you not take in enough protein, your bladder doesn't work very well. So, starting some of these fluids, I've been able to "go" a couple of times which means that discomfort has greatly improved. From the time I started this entry the nurse came in and said that my sodium (?maybe, I think that was it) continues to go down, which I guess isn't good. So, now my liquids are restricted and they bumped up the iv. I hope and pray to God that I don't have to stay here for long. There is some talk about keeping me here until my tests on Thursday. That does not sound like a fun option. If you are a phriend, you know what I'm talking about. But, on the plus side the pharmacist has lots of experience with Flolan!! I am pleasantly surprised!
Well, I'm going to try to sneak in a nap. My roommate is senile and the nights are difficult for her. I'll post more later if I get a chance.
Much love to you all
Annette

Hooding Ceremony

This is graduation for many kids including our son Nick. Today was a crazy one and I am completely wiped out so I'm going to have to make it short and sweet. Rod came home at about 12:45 to pick me up and head on to Joslyn where the ceremony was to be held. We got there at about 1:25 thinking we were really early with the ceremony starting at 2:00. At that time the parking lot for Joslyn was full. Later I heard people got there as early as 12:45 and it was full then. Well the tough security guards were not going to let us in. We were at the back entrance which would make for a significant walk.Rod told them that I couldn't walk and if he could just drive me up and drop me off. They told him no. Well, that is the wrong thing to say to my big protective man. Rod then got out of the car and told them a few colorful words. Suddenly they decided he could drive me up and drop me off. Well, they move move the cones fast enough and I think he nailed one or two of them! He is my hero! Anyway, the ceremony was great! Rod had his own special gown and such and sat on the stage and when it was time for Nick to be hooded, (which means to put a bright colorful scarf thing on the shoulders) Rod got up and went over and hooded Nick himself. Then, he hugged him. About half of the audience went, "Awwwww) and yes, I started crying. Anyway what we thought would take 1 or so hours took 3 and then there was a reception. I didn't get home until 6:30 and had only eaten a grape and a popsicle all day so I was pooped.
Anyway, I just wanted to get in a quick note to thank you for all of your continued prayers. Without those prayers there is no way I would have gotten through this day,including dragging my oxygen up and down the aisle taking pictures. I don't have that energy from eating a popsicle and a grape. It can only come from your prays and our Father.
Tomorrow is graduation along with about 500 others. They also graduate nurses, pharmicist, etc. There will be family around to help and Rod won't have to be on the staged so I'll get some help.
Once again much, much love to each and every one of you.
Annette

Doctor Appointment

I should probably be in bed, but I wanted to tell you about my doctors appointment. This GI that I saw at the Med Center was fabulous! Her name is Dr. Young. I told her about what has been going on for the last month or so. She said the best way to figure out what is wrong is to go ahead and do the scope and the colonostomy (sp?). But, I'm considered a high-risk patient because of the ph and being on coumadin. She will need to get some extra help and I have to get off the coumadin and switch over to those "lovely" Lovanox shots before it can be done. So, scheduling the additional staff and the coumadin issue means I won't be having this done until this Thursday, the 10th. Actually, after hearing what has to happen, I can't believe it can happen that soon! In the meantime, she told me I could take my reflux medicine twice a day to see if I can try to get a few more things down. All in all I think it was a good day. We have a plan and the wheels are rolling. You can't for much more than that!

As always, thank you all for being here.
love
annette

Hello again

Well, it's been another tough day. I've been fighting nausea most of the day and so far I'm still winning. I've now decided that Tums and Bepto Bismol are a food group. When I was just having the Flolan side effect nausea problems I took a great medicine called Zofran. The problem now is that the Zofran sometimes does take the nausea away but then it increases my appetite which then starts the cycle all over again.
Tomorrow is an important day. I have an appointment in the morning with a GI specialist down at the Med Center. Who knows, maybe she'll say that I just need to take some medicine and all will be good. Just trying to keep the positive attitude going. :)
Much love,
Annette