Vent

Hey my CP Family,

I hope you are all having a good evening with little/no pain. I just wanted to vent a second.

I went in yesterday to get a nuclear stress test done on my heart. Well after getting up at Oh-dark thirty (5:30) and driving there. They couldn't get my heart rate down low enough nor could they get IV access for the test. I have a Mediaport but it's not a power port so contrast can't go through it.

So I was told that either they put a line in my jugular vein and try a different drug to slow my heart. Which potentially could cause my heart to stop beating, or they could go ahead and do a heart catherization. So I was sent home and they said they'd call me.

Well still as of today they've not made up their minds on what to do. It's complicated cause I have issues with blood clots and I am on Coumadin. Well, with a cath they have to go into my aorta and bleeding is a HUGE factor. So IF they do the cath I have to come off Coumadin and go on lovenox for five days, then off lovenox for two days, but durning those days I will have to be admitted so I can have a Heprin drip running. I have currently a huge blood clot in my superior vena cava and I HAVE to be on blood thinners.

I'm sick of Drs and procedures, my back is killing me December won't get here quick enough, I sure hope the injections to my back help. I'm feeling really unwell this evening, I had my 3rd dose of Benylsta today. I had to get 50mgs of Benadryl IV twice today, to get me through the infusion. I haven't seen any GOOD things yet from the drug, but have some BAD things going on. My insominia is bad, my mood is swing back and forth, and I'm feeling irrational at times. Guess, I may need some ativan, will talk to my PCM on Dec 3rd.

I now will get my infusions every 28 days and see what happens. I will start taking my injectable methotrexate again with the Benylsta. My daughter will be home for Thanksgiving from college, hubby is still on the fence about his trip to KY. He wants to see how I do over the weekend. Whenever he talks to his family, he talks like he's coming, he HASN'T told them I am on a new drug and possibly he won't be able to come. He feels its none of their business when it comes to my health. They know im very ill, but i don't think KNOW just how bad. All I know is IF he doesn't go I'll be blamed somehow.

Okay, I'm sure you're sick of this so I'm gonna go and try to eat a toasted bagel and glass of milk. Then I'll go back to bed, hope you all have a good weekend. Thanks for being there.

Hugs,
Barbara

Barbara, I'm sorry your procedure was cancelled, how aweful and how dare them for keeping you waiting without any news. Doctors are just so full of themselves. I wonder how these professionals would feel it the tables got turned, geezee....Hope you can rest up over the weekend and get some low pain breaks.
prayers...you can vent anytime...

Hi Barb,

I hope you are getting some sleep tonight. How many infusions do you need before you see positive results? We had a busy day shopping and we started to put some Christmas lights up outside.

Call me when you feel up to it.

Love, Julia

Hi Barb, so sorry that you are still having a tough time with everything. I wish I have the magic answers for you. Please know that we all care about you and vent away any time you need to. We understand the position you are in.
Sending you soft hugs and many prayers.

suzane

Well here I sit with my lower back killing me. I don't get my first injection until the 13th of December. My PCM did approve upping my methadone by another 5 mg. So I am taking 20mg daily right now. I ran into my cardiologist who specializes in Methadone and he said it would be alright if I wanted to go back up to 30mg daily. He said as long as I was getting regular EKG's it should be ok. We just need to watch my QT interval closely.

My other cardiologist called and said that they are going to try a different type of nuclear scan of my heart. I'm not sure if they plan on putting an IV in my jugular vein or not. When the Dr called I was at another appointment with my new dermatologist. As I have NO immune system, I have issues with warts, especially on my thumbs. They are so bad that my left thumb is deformed and the right is starting to look bad too. We have tried EVERYTHING out there, I can not get rid of them because I can not fight off the virus.

His game plan now is to give me IV Cidofovir. This is an anti viral medication that is commonly used in AIDS patients. According to the Dr I do not need a working immune system to have this drug work. I will be in the hospital for several days up to a week. This drug is very hard on the kidneys and I must be monitored the whole time.

I really am hoping this helps my fingers, I'm at the point, I FEEL like drinking a whole bottle of booze and chopping the thumbs off. LOL. I've asked the Drs to remove them at the knuckle but I'm sure you can guess what my answer has been. Anyway, they are working on getting my admission set up, I'm hoping after the 4th of Dec. Not sure on the nuclear test on my heart I will call my Dr back in the AM.

As to my hubby and the family get together for Thanksgiving, he's leaving at dawn. He hopes to be home sometime on the weekend most likely on Sunday. It's amazing he's spoke with his brother at least five times since Friday and NEVER once has he or his girlfriend have said sorry Barb and Nikita can't make it. Even though I've been married to this man almost 28 years, we will not be mentioned over the holiday. Hubby himself made the comment, when I reminded him to let anyone who asked where we were, that my Dr wouldn't allow me to travel. His reply was "why would my Aunt or Cousin ask where you are", no ones gonna ask about you". I have to say my feelings are DEEPLY hurt.

He doesn't get it that I care what people think, and it hurts me that I FEEL like I'm not part of the family. His new brother in law will be there and a new potential brother in law will also be there, and yet its like my daughter and I dont count. Like I mentioned before they didn't even say sorry to me when my father passed away. Our daughter isn't close to any of them either. If you ask her how many are in her family she replies "my mom and dad". I will have a long day tomorrow as I will have to drive and pick up my daughter from college. It will take me 2 hrs there and 2 back if traffic is ok. I also, will have to take her back on Sunday. Not sure what we'll do for dinner but we will figure it out on Thursday I guess.

Ok enough of me venting I think my BP is rising. Hope you all have a good night.

Hugs,
Barbara

It's a day of giving thanks. I'll be thankful that I won't be working at the convenience store like I did in 1992, and had to call the restaurant across the street for a Thanksgiving dinner. When they told me they didn't serve those to go, I explained that I was pulling a double shift right across the street from them so everyone else at the store could be with their families, and all my family was back in Louisiana (I was in Texas at the time) so I offered to work the full day. They sent over a waitress with a full meal, all the trimmings, (and double desserts) and wouldn't take my money. I thought that was pretty cool of them.

Sometimes it's hard to find things to be thankful for. Sometimes they are very small things. But you have to find them. The way the sun comes in a window and hits something just right. That first blast of warm air from the heater kicking on. The good people here on the boards, who have never met you, but care about you anyway. I know I'll be giving thanks for that. I'll be thankful that my pain probably won't be as bad as it could be. And I'll get to see my 6 year old nephew giggle when he plays with my long beard.

We get tied up in the big stuff, but sometimes we need to be thankful for a comfy pillow, or a glass that fits the hand just right, or the fact that there are people that do care about us, even if they wouldn't recognize us on the street. And that, I think, is pretty cool.

Barb I am sorry that things worked out this way for you! I will keep you and your daughter in my prayers this Thankgiving week. At least know that we are all here for you. I do hope that everything goes well you and your daughter, during this time.

White Beard