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My Last Day

[August 7th is Karen’s last day.

“Gone Too Soon. Angels of invisible illnesses” (Website contains a music video.)

...I am trying to understand how to walk this weary land without you Karen. When you walked on the Earth you helped the broken and the hurt…]

Wednesday, August 7, 2013 at 8:49am EDT

I feel awful. Pressure is very low. I can’t be upright for long. I confirmed yesterday with Pittsburgh that they got the prescription for my BP. The radiologist had to look over it before they will allow me to schedule. I’ll follow up again today, if I do not hear from them. A tiny amount of Diamox makes me so much worse when I am leaking. Dr. Schievink wants me to take a large dose prior to my BP hoping that may control HP. I don’t look forward to getting sick from Diamox.

Wednesday, August 7, 2013 at 9:07am EDT

My body has a large frame for 5’11’’ so I looked good at 200 pounds solid muscle. I lost inches but now I have 160 pounds of fat!

Wednesday, Aug 7, 2013 at 11:47am EDT

[Messages to me at work:]

They won’t even consider scheduling it until Monday because the doctor that did it before is out of town. They want to talk with him because of my history first. They have no idea what rebound high pressure is. Makes me want to consider Dr. Gray or Dr. Krantz.

[For unknown reasons Karen never once tried to contact Dr. Gray on her last day. She had more ways to do it than to contact anyone else, email, phone, cell-phone, pager. I can only speculate that she thought Dr. Gray was on vacation or otherwise not available. Dr. Gray was really upset, as was Jeffery Taylor (her PA that never gets enough credit), when they found out about Karen’s death and that Karen had not tried to reach either of them.]

Wednesday, August 7, 2013 at 11:51am EDT

[UPMC] won’t even consider scheduling it until Monday because the doctor that did it before is out of town. They want to talk with him because of my history first. They have no idea what rebound high pressure is. The doctor doesn’t either because I asked him when I saw him.

Wednesday, Aug 7, 2013 at 12:22pm EDT

I sent this to Dr. Schievink’s office.

Subject: Difficulty getting second blood patch at University of Pittsburgh Medical Center Presbyterian.

I have resent the fax and I attached a copy here for your records.

They received the prescription. Thanks for re-sending it.

Unfortunately, I have difficulty getting a second blood patch at University of Pittsburgh Medical Center Presbyterian. Because of my complicated history, they will not schedule me until after they speak with [UPMC doctor], the neuroradiologist that did the first blood patch. He won’t be in until sometime next week. Isn’t Dr. Schievink going to be out next week, so [UPMC doctor] won’t be able to speak with him?

Rebound high pressure blew the blood patch. [UPMC doctor] does not know about rebound high pressure. I asked him when he did the first blood patch. I am uncomfortable with a doctor not knowledgeable about rebound high pressure deciding whether, or not I can have a blood patch again.

Do you have any suggestions?

Wednesday, August 7, 2013 at 12:29pm EDT

Dr. Schievink is going out of town next week, so he won’t be available for the doctor in Pittsburgh.

Wednesday, August 7, 2013 at 12:36pm EDT

The folks in Pittsburgh won’t consider scheduling a second blood patch until Monday because the doctor that did the first blood patch is out of town. They want to talk with him first because of my history. I know this doctor has no idea what rebound high pressure is. I asked him when he did the blood patch. Dr. Schievink is going out of town next week, so he won’t be available to consult with the doctor in Pittsburgh. This leaves the doctor in Pittsburgh that is not very knowledgeable about this condition deciding if I can have a blood patch. I am uncomfortable with this situation. I left a message with Hoorance to check Dr. Gray and Dr. Krantz schedule.

Wednesday, August 7, 2013 at 12:43pm EDT

I am nearly incapacitated. My vision is off. My hearing is affected. My head and face just burn, I’m nauseated, dizzy. There’s other symptoms I just can’t think clearly right now. I don’t know what I will do. I would like a full volume patch like I had in Pittsburgh. Not the targeted thing they usually do.

[I do not know who ‘they’ is in this context? As she says she is confused. Sadly, in her emails to me, I did not understand how confused! I can’t find the email.

At some point Karen says to me in an email: “A friend gave me Dr. Krantz’s number. Should I contact him?” My response was an underwhelming, ‘I guess so.’ Another regret I will have for the rest of my days. I should have said ‘Yes’ with enthusiasm. It is Dr. Krantz that she is trying to reach in her final message. Karen and I never meet Dr. Krantz. Dr. Gray did tell me in March of 2014 that Dr. Krantz is even better than she is now.]

Wednesday, August 7, 2013 at 1:04pm EDT

I have a copy of the prescription for a BP from Dr. Schievink. I wonder if that would help them do a blind one? I have all my imaging from Cedars. The past few days I’ve felt so bad with this that I consider going to the local ER for a BP but I think that would be a waste of time. Our hospital is a small town rural hospital.

Wednesday, August 7, 2013 1:04pm EDT

I have a copy of the prescription for a BP from Dr. Schievink. I wonder if that would help them do a blind one? I have all my imaging from Cedars.

The past few days I’ve felt so bad with this that I consider going to the local ER for a BP but I think that would be a waste of time. Our hospital is a small town rural hospital.

Wednesday, August 7, 2013 at 1:25pm EDT

Positive it is LP. Diamox makes me SSSOOO much worse!

Wednesday, August 7, 2013 at 2:28pm EDT

I don’t know what to do. I hurt a lot.

Wednesday, August 7, 2013 at 2:31pm EDT

No medicine at all helps. Not even Fioricet. Caffeine doesn’t help very much either.

Wednesday, August 7, 2013 at 2:35pm EDT

As a result of the doctor not being up to date, I’m getting resistance scheduling another one, even WITH the prescription from Dr. Schievink. Resistance scheduling a blood patch, that is.

Wednesday, August 7, 2013 at 2:37pm EDT

My massage therapist says she works on those [Trigger Points]. It’s not just the headache, it’s my vision, hearing, dizziness, nausea.

Wednesday, August 7, 2013 at 2:56pm EDT

I tried ginger, activated charcoal, and a couple anti-nausea medications. None work. The only thing that works for nausea is lying down.

Wednesday, August 7, 2013 at 3:23pm EDT

[This is Karen’s final message to anyone. She was gone by the time I called at 4:30pm.]

I tried [A Duke phone number]. That is a general neuroradiology number. They forwarded me back to Hoorance for scheduling.

National Suicide Prevention Lifeline

http://www.suicidepreventionlifeline.org

1-800-273-TALK (8255)

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