The Latest
Where to begin?
I have been holding off on posting because we were waiting to hear from C’s insurance company on whether they would support the use of Revlimid, a new derivative of thalidomide, as a treatment for C. The answer to that came in this morning and it was positive. Everything else was in place so as soon as the drug arrives from the pharmacy (only two in the whole country supply this drug), C will begin taking it. It is an oral application so she can take it at home which is nice.
One of the side effects however is that it will probably lower her white cell count and her platelets, which she has precious few of to begin with. So, even though the Revlimid will not require trips to the clinic, it is quite likely that we will continue to make frequent visits for platelet infusions. Which brings us to this week.
This week, we have made three unplanned trips down to the U. to get blood products. C was really tired over the weekend and by Monday, she could barely get out of bed. I came home from a doctor’s appointment to find her very groggy and lethargic. The last time I saw her like this, her hemoglobin levels were in the basement and prompted much excitement among the normally very laidback staff at the BMT clinic. I didn’t want to cause a repeat panic, but I brought her in anyway. Is was good that we went. Even though her hemoglobin levels were not as bad as before, she was in dire need of RBC’s and we wound up spending a good part of the day pumping stuff into her.
This was repeated again over the last two days and will most likely follow again tomorrow. I think we should just string some long tubes between the U and our house and save the driving. The benefits have been worth it though. She has much more energy and some color in her cheeks. If it were not for the stubborn nosebleed, we would be sitting pink.
We are all getting some doctor time these days. K went in Monday for a bone-scan on her lower legs and saw a sports medicine specialist today to try to understand her persistent leg pain that is now keeping her from competing in track. This started last year as shin-splints and reappeared this year as soon as she started doing her hurdles. After her auto accident, the pain got much worse though there is no evidence other than time that appears to connect the two. The pain was so extreme; her coach banned her from running and urged her to seek medical help.
The doc we saw today said that his suspicion is that K does indeed have shin-splints that have been aggravated to a high level. This was supported by the bone-scan results. The doc said that in his opinion, the shin-splints are being caused by muscle use imbalance – K is not using all of her leg muscles when she runs and the ones that are working hardest have strained the portion of her leg where the muscle enters, and is anchored to, the bone.The recommendation is that K should see a sports physical therapist, exercise, and eat better (yea doc. I didn’t even pay him to say it – er, wait, I did pay him to say it, but it was cool anyway, because I had been saying it to her for years). So, we have made an appointment with the therapist and now we just have to wait and see if K makes the commitment to follow through.
Let’s see, what else is new? Oh, I got a job offer. That’s good. It is contingent on passing a background check and a medical evaluation (another name for peeing in a cup), so I won’t say more about that until it is final. If any of you are approached by someone wearing a black suit and sun glasses who asks you about me, feel free to tell them I am a great guy.Well, that’s enough for now.
Don’t want to give you information overload.
P.
I have been holding off on posting because we were waiting to hear from C’s insurance company on whether they would support the use of Revlimid, a new derivative of thalidomide, as a treatment for C. The answer to that came in this morning and it was positive. Everything else was in place so as soon as the drug arrives from the pharmacy (only two in the whole country supply this drug), C will begin taking it. It is an oral application so she can take it at home which is nice.
One of the side effects however is that it will probably lower her white cell count and her platelets, which she has precious few of to begin with. So, even though the Revlimid will not require trips to the clinic, it is quite likely that we will continue to make frequent visits for platelet infusions. Which brings us to this week.
This week, we have made three unplanned trips down to the U. to get blood products. C was really tired over the weekend and by Monday, she could barely get out of bed. I came home from a doctor’s appointment to find her very groggy and lethargic. The last time I saw her like this, her hemoglobin levels were in the basement and prompted much excitement among the normally very laidback staff at the BMT clinic. I didn’t want to cause a repeat panic, but I brought her in anyway. Is was good that we went. Even though her hemoglobin levels were not as bad as before, she was in dire need of RBC’s and we wound up spending a good part of the day pumping stuff into her.
This was repeated again over the last two days and will most likely follow again tomorrow. I think we should just string some long tubes between the U and our house and save the driving. The benefits have been worth it though. She has much more energy and some color in her cheeks. If it were not for the stubborn nosebleed, we would be sitting pink.
We are all getting some doctor time these days. K went in Monday for a bone-scan on her lower legs and saw a sports medicine specialist today to try to understand her persistent leg pain that is now keeping her from competing in track. This started last year as shin-splints and reappeared this year as soon as she started doing her hurdles. After her auto accident, the pain got much worse though there is no evidence other than time that appears to connect the two. The pain was so extreme; her coach banned her from running and urged her to seek medical help.
The doc we saw today said that his suspicion is that K does indeed have shin-splints that have been aggravated to a high level. This was supported by the bone-scan results. The doc said that in his opinion, the shin-splints are being caused by muscle use imbalance – K is not using all of her leg muscles when she runs and the ones that are working hardest have strained the portion of her leg where the muscle enters, and is anchored to, the bone.The recommendation is that K should see a sports physical therapist, exercise, and eat better (yea doc. I didn’t even pay him to say it – er, wait, I did pay him to say it, but it was cool anyway, because I had been saying it to her for years). So, we have made an appointment with the therapist and now we just have to wait and see if K makes the commitment to follow through.
Let’s see, what else is new? Oh, I got a job offer. That’s good. It is contingent on passing a background check and a medical evaluation (another name for peeing in a cup), so I won’t say more about that until it is final. If any of you are approached by someone wearing a black suit and sun glasses who asks you about me, feel free to tell them I am a great guy.Well, that’s enough for now.
Don’t want to give you information overload.
P.
6 Comments:
your blog is very good, continue like this !!!
Good luck ;) love the pic! HHNT
You are teasing us with just a glimpse! HHNT!
just a little more, please.
happy hnt!
Nice! Happy HNT!
wow, what a lot you've all been through. i think stringiung the tubes between U and home sounds like an excellent idea. either that or have them bring the stuff to you. let the well ones make all the trips and give the ill ones a rest...
so i see from the pic you are ready to give a sample??
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