Asking for pixie dust, prayers, or happy jig...UPDATE 9/19 Final news

[disneym2m]

Hi everyone:

I just wanted to say thank you for all of your advice and support.

Don't worry. I have the closest hospital on speed dial should I need it.

Right now it is hard to diagnose with great certainty. For years I am stable and doing well, then all of a sudden everything goes crazy. My kidney levels are normal except my creatinine level which has sky rocketed. I have stopped certain kidney medications for the week to see if that will help stable everything. I go again on Monday for blood work to see if this has helped. Thank goodness for universal LabCorps.

The problem is that this shot of medicine I had to have to settle things in the reproductive area has to wear off. The kidney doctors believe that this is the problem and until it wears off and out of my system it is hard to tell. I have one more week with this medication.

I have been with my doctor for 10 years and he knows what my kidneys have been doing. A few weeks ago I had ultrasounds and another kidney biopsy performed. All the results came back saying that not much has changed over the past 10 years. Because of this, I think this is why everything seems so strange that all of a sudden my kidney levels would spike for no reason.

Don't worry. If the doctor tells me to go to the hospital or come home right away, I will. Also, if I feel worse I will be going to the hospital. Maybe the same doctor I saw there 3 years ago is still there...LOL.

Thanks again for your support and your advice. I think I am letting things get to me and I think the worse. I have always been told that when my ankles begin to swell that means the kidneys are failing, so when this happens, caused perhaps by another reason, it still scares me.

I did actually try to see another kidney doctor while I am here, but since I live out of state it has to be an emergency in order for me to do that and it has to be through the hospital. Don't you love non-universal health care...LOL.


P.S. I was forced to visit the San Fran Disney Store yesterday. My husband dragged me there because he knew that even a little bit of Disney would help brighten my day. It did. Too bad I can't stay there until I leave...LOL.

 

[Kristina]

Glad to hear that you were in better spirits ! Smart move of your hubby taking you to the Disney store. Even filled with childrens toys for the most part, that place makes me happy too . Today is Monday, I hope you were able to speak with your Dr. and that she or he were able to reassure you and that you feel better physically also .

 

[disneym2m]

Hi everyone:

Thoughts, prayers, pixie dust etc. really do work!!!!! Thank you, thank you, thank you, thank you, thank you, thank you, etc.

My kidney creatinine levels have dropped from 3.9 to 3.2, which for me is good. The doctor is hoping that by next week my levels are back to my normal levels, which is between 2.6 and 2.8.

The doctor does not believe that my kidneys are causing my swelling. Not enough of my levels are messed up to say that it is my kidneys, which is good. He did prescribe a medication to help relieve the swelling, which is great,

Bad news...... my kidney doctor and gynecologist have been talking and comparing notes. It seems that every time my kidney levels spike it has something to do with my reproductive system. It has been "decided" that I will need to have surgery. I will have to sacrifice my reproductive system in order to "save" my kidneys. If I keep going on the track that I am I will be on dialysis sooner than expected. If I sacrifice my reproductive system it will help relieve the pressure off my kidneys. It seems that my reproductive system is messing with my hormones which is messing with my kidney levels.

So now I have to think about what I want to do. I meet with both doctors, separately, next Tuesday to decide the next step.

Continued thoughts, prayers, pixie dust is greatly appreciated.

 

[Cherinva]

Continued prayers for you....

 

[nblake05]

I, too, am sending pixie dust your way! I'm glad to hear that things are looking up...but I'm still sorry you have to go through this, especially being away from home. I know we don't know each other but I'm just down in Tucson and can get to San Fran fairly easily (DH is a pilot) if you need someone to come up there to be with you. My brother lives in the Marina District so I can crash with him.... Just throwing it out there so you maybe don't feel quite so isolated! I hope things continue to improve for you!

 

[disneym2m]

I, too, am sending pixie dust your way! I'm glad to hear that things are looking up...but I'm still sorry you have to go through this, especially being away from home. I know we don't know each other but I'm just down in Tucson and can get to San Fran fairly easily (DH is a pilot) if you need someone to come up there to be with you. My brother lives in the Marina District so I can crash with him.... Just throwing it out there so you maybe don't feel quite so isolated! I hope things continue to improve for you!

Nicole....thank you so much for your kind and wonderful offer. This is what makes this boards so great; Disers willing to help other Disers no matter who they are. Thank you, thank you, thank you and more thank you.

But, I think I will be okay. Today I am taking it easy (doctor's orders). Tomorrow my husband, Aaron will be finished with his training around lunch time and then he will take me to the Walt Disney Family Museum. We are trying to leave on Friday but United Airlines is being a pain about switching days, so we will probably be on our way home on Saturday.

I am beginning to feel better each day. Now that I know that it isn't my kidneys that are causing all the problems but instead this stupid medication I had to take, I can breathe a little easier. I am not quite out of the woods yet, but my doctor is hoping that my kidney levels will improve as the medication leaves my body system. If the kidney levels don't return to "normal" in about two weeks, which should be the amount of time this medication will be gone, then he will start looking at other things to do.

Now send pixie dust for Aaron. He strongly dislikes Disney and tomorrow he gets to spend a few hours surrounded by Disney history......

 

[disneym2m]

Glad to hear that you were in better spirits ! Smart move of your hubby taking you to the Disney store. Even filled with childrens toys for the most part, that place makes me happy too . Today is Monday, I hope you were able to speak with your Dr. and that she or he were able to reassure you and that you feel better physically also .

Hi Kirstina....Sometimes Aaron can have some great ideas. He strongly dislikes Disney but because he knew it would cheer me up, he "suffered" to help me. This is what makes him so great (as are all husbands/partners who do things for their wives/partners).

I will admit that I do miss the old Disney Stores. There were a few adult items but you are right mostly kid items. What was really cool, was that I was trying to take a picture of the Disney Key that opens the store each morning and a Cast Member actually let me hold it. Now granted she had to be in the picture with me also holding the key but it was still cool. She wouldn't let me have a picture of just me holding the key. I guess she thought I might steal it.....

 

[asthemusicplays]

*hugs*, prayers, and pixie dust your way!

 

[disneym2m]

Hi again everyone:

Well it appears that all the prayers, thoughts, and pixie dust, etc. has worn off .

I saw the kidney doctor today and my news is worse. My kidney creatinine level has shot up from 3.2 to 4.9 and my feet and ankles are still swollen. My blood pressure has sky rocketed to 210/70 (yes I had to go to the emergency room today, where of course they did nothing to help).

My surgical procedure will have to be postponed until my kidney levels straighten out.

Tomorrow I start new meds for the kidneys and the high blood pressure. We will see what happens .

I am so exhausted and all I do is cry . My hormone level must really be out of whack. I know this isn't even the start to the worst that has yet to begin, but I just don't know what to do anymore. I just want to feel a little better.

Sigh.

 

[SamSam]

Hi again everyone:

Well it appears that all the prayers, thoughts, and pixie dust, etc. has worn off .

I saw the kidney doctor today and my news is worse. My kidney creatinine level has shot up from 3.2 to 4.9 and my feet and ankles are still swollen. My blood pressure has sky rocketed to 210/70 (yes I had to go to the emergency room today, where of course they did nothing to help).

My surgical procedure will have to be postponed until my kidney levels straighten out.

Tomorrow I start new meds for the kidneys and the high blood pressure. We will see what happens .

I am so exhausted and all I do is cry . My hormone level must really be out of whack. I know this isn't even the start to the worst that has yet to begin, but I just don't know what to do anymore. I just want to feel a little better.

Sigh.

I am so sorry that things are going well and praying that your new meds help get you on the road to recovery.

 

[Phoenixblue]

I am so sorry you are having to deal with all this.
But I do have more and being sent your way.

I hope they help a bit.

I know its hard, but take a deep breath and just hang in there (my mom has some serious medical issues too, so I see every day how hard it can be).
As hard as it is, know many of us are thinking of you and sending and every day.

 

[Disney Khi]

 

[disneyholic family]

i'm so sorry. sending more pixie dust and prayers your way.

 

[sayhello]

So sorry that you've hit this snag! Continued hope & prayers that it's a short, temporary bump, and that you'll be on your way to feeling better really soon!

Sayhello

 

[corky441]

I'm so sorry to hear about your health problems.

Sending truckloads of Pixie Dust and healing thoughts your way

 

[Kristina]

Oh no! I am so sorry to hear of this turn and that you are feeling so sad also . Lots of hugs and best wishes being sent for you!!

 

[baby1disney]

Melissa, I have been wondering about how you were doing. I am glad that you decided to seek comfort here. Know that we are here for you!

I would speak with the doctor's call service about the swelling and be persistent. The mind can be a terrible thing sometimes and not knowing what is really causing it or if it is some other type of reaction will make you feel worse.

Hugs.

I work in a doctor's office (I'm a CMA) and I get this every day!! I'm telling you right now, it's better for you to call and get it figured out than to wait around and see what happens. You'll feel better and so will your family.

I'm so sorry that you're going thru this!! But, you have a HUGE family on here and if you need to vent, go right ahead!!

 

[*NikkiBell*]

Hi again everyone:

Well it appears that all the prayers, thoughts, and pixie dust, etc. has worn off .

I saw the kidney doctor today and my news is worse. My kidney creatinine level has shot up from 3.2 to 4.9 and my feet and ankles are still swollen. My blood pressure has sky rocketed to 210/70 (yes I had to go to the emergency room today, where of course they did nothing to help).

My surgical procedure will have to be postponed until my kidney levels straighten out.

Tomorrow I start new meds for the kidneys and the high blood pressure. We will see what happens .

I am so exhausted and all I do is cry . My hormone level must really be out of whack. I know this isn't even the start to the worst that has yet to begin, but I just don't know what to do anymore. I just want to feel a little better.

Sigh.

I'm sorry to hear this news. Hang in there. Listen to your doctors and force your mind to focus on positive thoughts.

One of the things that has helped me in the past has been to start a gratitude journal. List three things you are thankful for everyday before you go to bed. It helps you refocus and concentrate on things other than what is bothering you. Google it. They don't have to be big things, but this is a powerful exercise.

 

[disneym2m]

Hi everyone:

First of all, I just want to thank everyone for your kinds words and support. It truly helps and gives me hope.

Thank you, thank you, thank you, thank you.......

Second, here is the bad news.....

So my creatinine level has been rising for the last 3 weeks, so the kidney doctor took me off my kidney meds. I saw the kidney doctor yesterday and he just as confused as I am as to why I have been rock solid for 10 years and in 4 weeks my kidney levels have sky rocketed.

He mentioned dialysis and I just lost it.

The plan right now is to increase my blood pressure medication to help with the high blood pressure. This is the first priority. Good news. My blood pressure has been 200/70 and after one dose of the new blood pressure meds, the blood pressure has come down to 168/88. I am excited about this, but know I still have a ways to go.

The doctor also increased the meds to help with the swelling. This morning I can actually bend my toes, so I am taking that as a good sign. But again I know I still have a way to go.

The doctor is giving my a couple of weeks to see if my creatinine level will drop on its own. If it doesn't then I start dialysis.

The one I have learned over the years, about my self, is that I am a fighter. I get bad news from the doctor, I cry then the next day I am doing research and such. So today I have been educating my self on dialysis. I am also looking into either John Hopkins or the Joslin Diabetes Center for a second opinion (because you never know).

And on the fun side, I am trying to milk a WDW trip out of my husband by using this illness..... I know that is wrong but hey, Disney does cheer me up.

 

[mdvlprof]

More prayers and and