Hey everyone,
I just wanted to let you know that I will be getting admitted the day after Christmas. I'm very thankful for my GI dr.---he's working at the hospital and not in clinic all this week, but he arranged and coordinated everything so quickly! I'm not doing very well. The pro-motility drug I've been taking hasn't helped at all, and it's getting harder to tolerate oral intake. All my back muscles have been getting weaker and forming tight, painful knots to compensate---my physical therapist said it's because my muscles aren't receiving enough nutrition. I've had to sleep past 2 pm every day now because I've been so tired. All this and more is going on, and yet, I look so normal on the outside!
On top of all that, I still cough and gag all day and night. We wonder if my secretions are going down the wrong way and ending up in my lungs. I got the overnight oxygen testing completed last week, but we won't get results at the moment because my sleep dr. is out of town these last two weeks of December.
We're not sure how long I'll be admitted. But I'll keep you posted! Everything is up in the air regarding how long I'll be on TPN (IV nutrition), etc.
I hope all of you have a blessed Christmas! I'm so thankful for you and your steadfast prayers.
P.S. I thought this was so neat! Last week, CNN wrote an article, and here is part of what they said: "We know parents whose children are in remission from cancer and others
whose children have mitochondrial disease. Their dream present would be
an end to childhood disease. Give to their causes if your family is
lucky enough to be untouched by serious illness."
Tuesday, December 23, 2014
Monday, December 15, 2014
More tests and referrals.
Hi everyone,
We thought this week would have been my scheduled admission to the hospital since I haven't tolerated glutamine, but we're trying one last thing to re-mobilize my small intestine. My GI specialist really wants to avoid TPN (he recently told us he has two critical patients in the hospital because of sepsis from being on IV nutrition).
I'm to take an antibiotic at a low dose for 10 days---this specific antibiotic can help the motility of the small intestine. It doesn't benefit everyone, but he just wants to exhaust all options. If I don't notice anything, then the plan is to get admitted to do a tube feeds trial and/or TPN (but it's always possible he may think of another option..). I'm still losing weight and feeling bad, so 10 days seems so long. :( I just need to keep waiting on the Lord. I know His timing is perfect.
Still gagging and coughing, too, especially at night. It wakes me up from sleeping. :( Very thankful for my sleep dr. He even emails me back on the weekends or late at night (btw, he made Portland Monthly's Top Doctors list for 2015 again! :) He will be referring me to Pulmonology and also ordered overnight oxygen testing which will be hooked to my CPAP and done this week.
Today I saw my physical medicine specialist because I've been dealing with something called "foot drop" (can be seen with many neurological disorders). It makes me trip when I walk around in our house. He ordered an ankle-foot brace which is similar to the kinesio tape that my physical therapist used on me in the past. It helped a lot, and I look forward to using the AFO brace!
My dr. also referred me to his colleague who is a foot and ankle surgeon. Not planning to have foot surgery, but I'm not sure if the lymphangioma in the bottom of my foot (I had it surgically removed in 2010) grew back because the "bump" looks bigger to me and hurts a lot. Dr. C isn't sure what type of MRI would be good to order for this specific problem, so he is referring me. Lots of appointments in the future! :/
We thought this week would have been my scheduled admission to the hospital since I haven't tolerated glutamine, but we're trying one last thing to re-mobilize my small intestine. My GI specialist really wants to avoid TPN (he recently told us he has two critical patients in the hospital because of sepsis from being on IV nutrition).
I'm to take an antibiotic at a low dose for 10 days---this specific antibiotic can help the motility of the small intestine. It doesn't benefit everyone, but he just wants to exhaust all options. If I don't notice anything, then the plan is to get admitted to do a tube feeds trial and/or TPN (but it's always possible he may think of another option..). I'm still losing weight and feeling bad, so 10 days seems so long. :( I just need to keep waiting on the Lord. I know His timing is perfect.
Still gagging and coughing, too, especially at night. It wakes me up from sleeping. :( Very thankful for my sleep dr. He even emails me back on the weekends or late at night (btw, he made Portland Monthly's Top Doctors list for 2015 again! :) He will be referring me to Pulmonology and also ordered overnight oxygen testing which will be hooked to my CPAP and done this week.
Today I saw my physical medicine specialist because I've been dealing with something called "foot drop" (can be seen with many neurological disorders). It makes me trip when I walk around in our house. He ordered an ankle-foot brace which is similar to the kinesio tape that my physical therapist used on me in the past. It helped a lot, and I look forward to using the AFO brace!
My dr. also referred me to his colleague who is a foot and ankle surgeon. Not planning to have foot surgery, but I'm not sure if the lymphangioma in the bottom of my foot (I had it surgically removed in 2010) grew back because the "bump" looks bigger to me and hurts a lot. Dr. C isn't sure what type of MRI would be good to order for this specific problem, so he is referring me. Lots of appointments in the future! :/
Wednesday, December 3, 2014
Worsening problems.
Hey friends,
I'd appreciate your continued prayers! My small intestine is in bad shape. Still can't tolerate j-tube feeds or solid food orally. And I'm now getting distended with just liquids... :( The dysmotility in my small intestine has gotten so much worse. Mitochondrial disease is horrible! I'm being followed very closely by my GI dr. We've been trying a lot of different things, but none have been helping. He wants to exhaust all other options before we move on to TPN (total parenteral IV nutrition) which is always a last resort because it comes with many risks and complications, including sepsis (blood infections).
I'm to try an amino acid called glutamine for 4 days to see if it will help the mitochondria in my GI tract. And we're also trying another tube feeds formula since the elemental one wasn't tolerated well last week.
If these last things don't help, then we're moving on to TPN. I'll have to get a central line placed and be admitted for the start of it for monitoring, daily lab work, and hourly blood sugar checks.
I'm so thankful for my GI specialist! He's even trying to get in touch with my mito specialist in San Diego.
Today I saw my pain dr.'s colleague, and she is so sweet! :) I'm so glad she can keep in touch with him. The whole pain center misses him a lot! If I have to start TPN, I'll be seeing the inpatient pain service at OHSU to receive ketamine infusions for CRPS pain control. The CRPS has been flaring up because I'm not getting enough nutrition. I'm also dealing with daily headaches and low blood pressure again from lack of food..
On top of all this, two weeks ago I started dealing with forceful coughing bouts to the point that I gag and retch. :/ I'm not sick, though. We're not sure if something lung-related is going on now. See how bad mito is? :( I emailed my sleep dr. today to see if he can refer me to pulmonology.
Next week, I will be getting my j-tube changed yet again to a different-sized mic-key button. And I also have a follow-up with cardiology to go over the holter monitor results.
I continue to press on---the Lord's got this! :) And like always, He carries me through the roughest of times.
I'd appreciate your continued prayers! My small intestine is in bad shape. Still can't tolerate j-tube feeds or solid food orally. And I'm now getting distended with just liquids... :( The dysmotility in my small intestine has gotten so much worse. Mitochondrial disease is horrible! I'm being followed very closely by my GI dr. We've been trying a lot of different things, but none have been helping. He wants to exhaust all other options before we move on to TPN (total parenteral IV nutrition) which is always a last resort because it comes with many risks and complications, including sepsis (blood infections).
I'm to try an amino acid called glutamine for 4 days to see if it will help the mitochondria in my GI tract. And we're also trying another tube feeds formula since the elemental one wasn't tolerated well last week.
If these last things don't help, then we're moving on to TPN. I'll have to get a central line placed and be admitted for the start of it for monitoring, daily lab work, and hourly blood sugar checks.
I'm so thankful for my GI specialist! He's even trying to get in touch with my mito specialist in San Diego.
Today I saw my pain dr.'s colleague, and she is so sweet! :) I'm so glad she can keep in touch with him. The whole pain center misses him a lot! If I have to start TPN, I'll be seeing the inpatient pain service at OHSU to receive ketamine infusions for CRPS pain control. The CRPS has been flaring up because I'm not getting enough nutrition. I'm also dealing with daily headaches and low blood pressure again from lack of food..
On top of all this, two weeks ago I started dealing with forceful coughing bouts to the point that I gag and retch. :/ I'm not sick, though. We're not sure if something lung-related is going on now. See how bad mito is? :( I emailed my sleep dr. today to see if he can refer me to pulmonology.
Next week, I will be getting my j-tube changed yet again to a different-sized mic-key button. And I also have a follow-up with cardiology to go over the holter monitor results.
I continue to press on---the Lord's got this! :) And like always, He carries me through the roughest of times.
Thursday, November 20, 2014
Good news and bad news.
Hey friends,
We got the CT scan results yesterday! The images showed that I had something called Buried Bumper Syndrome (a rare complication with feeding tubes)....basically, the balloon on the j-tube (which is inflated with 1 ml of water to hold it in place) got stuck in my abdominal muscle.. :-O No wonder I am dealing with pain and spasms! So my GI surgeon's office got me in that afternoon. I've been having appointments every day....I'm tired to say the least. My surgeon pulled the tube out and replaced it with a temporary balloon-less tube to let the area heal. And she'll later switch it to a different size in 3 weeks. We're still not sure if this will resolve all issues as my GI specialist said there may be more than one thing going on, including the motility issue. But at least we can take care of this specific problem now.
Because I'm losing weight again, my GI dr. is going ahead and starting me on an elemental tube feeds formula which is more broken down and usually easier for patients with dysmotility to tolerate. I see him again in 12 days!
Today I had urodynamic testing (super thankful that's out of the way!), and the results aren't good.. My nervous system is not working well at all, and she thinks this is from a cerebellum issue and/or a spinal cord problem (which my mitochondrial specialist suspects as well when I saw him back in June). My specific bladder issue is hard to treat, but she is starting me on a medication....sometimes it works and sometimes it doesn't. If it doesn't help, she'll re-evaluate and go up the ladder from least invasive to invasive.
Now for some good news---more of my muscle was found which means the mitochondrial DNA testing can be started as soon as my insurance approves it! :) If all that goes well, I have a tentative appointment with my mito specialist in San Diego on January 20th!
The first week of December, I have GI, an appt. with my pain dr.'s colleague, and physical therapy. So I will be enjoying next week off! :)
Have a blessed Thanksgiving next week!
Love,
Kerissa
We got the CT scan results yesterday! The images showed that I had something called Buried Bumper Syndrome (a rare complication with feeding tubes)....basically, the balloon on the j-tube (which is inflated with 1 ml of water to hold it in place) got stuck in my abdominal muscle.. :-O No wonder I am dealing with pain and spasms! So my GI surgeon's office got me in that afternoon. I've been having appointments every day....I'm tired to say the least. My surgeon pulled the tube out and replaced it with a temporary balloon-less tube to let the area heal. And she'll later switch it to a different size in 3 weeks. We're still not sure if this will resolve all issues as my GI specialist said there may be more than one thing going on, including the motility issue. But at least we can take care of this specific problem now.
Because I'm losing weight again, my GI dr. is going ahead and starting me on an elemental tube feeds formula which is more broken down and usually easier for patients with dysmotility to tolerate. I see him again in 12 days!
Today I had urodynamic testing (super thankful that's out of the way!), and the results aren't good.. My nervous system is not working well at all, and she thinks this is from a cerebellum issue and/or a spinal cord problem (which my mitochondrial specialist suspects as well when I saw him back in June). My specific bladder issue is hard to treat, but she is starting me on a medication....sometimes it works and sometimes it doesn't. If it doesn't help, she'll re-evaluate and go up the ladder from least invasive to invasive.
Now for some good news---more of my muscle was found which means the mitochondrial DNA testing can be started as soon as my insurance approves it! :) If all that goes well, I have a tentative appointment with my mito specialist in San Diego on January 20th!
The first week of December, I have GI, an appt. with my pain dr.'s colleague, and physical therapy. So I will be enjoying next week off! :)
Have a blessed Thanksgiving next week!
Love,
Kerissa
Monday, November 17, 2014
More tests.
Hi friends,
Some of you on facebook know how I had to go to the ER yet again last week for a lot of issues....I was also admitted overnight in the ED observation unit for IV hydration and pain control.
It's been crazy rough and hectic as I've had to keep going back and force between GI and Surgery to figure out what's going on---not feeling well and still dealing with intestinal spasms, abdominal pain, and intolerance of j-tube feeds (see previous posts for more info). Well, I saw my main GI dr. today, and it was a productive appointment. :) He's so awesome like always. He ordered a stat CT enterography scan which will be done tomorrow at noon! Please pray that this will give clear answers or at least help narrow things down.. He agrees that something is going on....I'm a puzzle to him.. I have to drink a lot of contrast for the scan...hopefully it's not too unpleasant!
I also have extensive urodynamics testing this Thursday which will be another long day. After that, I don't have any more doctors appointments, Lord willing, all next week! :) That will be a nice break before December which is filled with a lot of follow-ups.
Thank you for checking in!
Love,
Kerissa
Some of you on facebook know how I had to go to the ER yet again last week for a lot of issues....I was also admitted overnight in the ED observation unit for IV hydration and pain control.
It's been crazy rough and hectic as I've had to keep going back and force between GI and Surgery to figure out what's going on---not feeling well and still dealing with intestinal spasms, abdominal pain, and intolerance of j-tube feeds (see previous posts for more info). Well, I saw my main GI dr. today, and it was a productive appointment. :) He's so awesome like always. He ordered a stat CT enterography scan which will be done tomorrow at noon! Please pray that this will give clear answers or at least help narrow things down.. He agrees that something is going on....I'm a puzzle to him.. I have to drink a lot of contrast for the scan...hopefully it's not too unpleasant!
I also have extensive urodynamics testing this Thursday which will be another long day. After that, I don't have any more doctors appointments, Lord willing, all next week! :) That will be a nice break before December which is filled with a lot of follow-ups.
Thank you for checking in!
Love,
Kerissa
Wednesday, November 5, 2014
Rough.
Oh what a week it's been.. Thankful for my Lord and Savior who is always there for me in these challenging days.
A couple weeks ago, I started dealing with bad spasms in my small intestine and not being able to tolerate j-tube feeds---this is still going on today. The spasms cause my mic-key button to pop out partly over and over again. I haven't been able to eat solid food without a lot of pain, so I'm currently on a soft food diet. Last week, I also started experiencing dizziness every single day and night...it was horrible and I just felt unwell. Whenever I had doctor appointments, my blood pressure was checked each time and the numbers kept getting lower (my lowest recording was 80/62 and I'm usually 113/80ish). No wonder I didn't feel well!
Nothing was resolving, and last week, both my GI surgeon and GI specialist were out of town. My GI surgeon's resident squeezed me in---he thought maybe the "balloon" on the j-tube had too much water in it, but there was only 1 ml in it. So he wasn't sure what was going on.
This past Monday, the dizziness bothered me so much and I was dehydrated. Two nurses at both GI clinics said I should go to the ER to get IV fluids and labs done. Also, when I finally heard back from my GI dr., he wanted me to get an x-ray with contrast dye to check tube placement. So I spent 9 hours in the ER Monday evening. They gave me a whole liter of IV fluids and pain medication, and that helped a lot. :) The ER docs consulted with the blue surgery resident team for the spasms/tube issue. After I had the x-ray, the surgery residents studied the images and came to the conclusion that the j-tube was in the right spot and had not migrated. They believe that the dizziness was from dehydration and not getting enough nutrition. Regarding the spasms issue, they think it's from small intestinal dysmotility---not good news. But they're leaving this up to my GI specialist to figure out. We were able to connect with him, and he is not entirely sure---it could be dysmotility or an ulcer near the feeding tube.. He's starting me on an anti-spasmodic to see if that will help me tolerate solid food and tube feeds. He also mentioned I may need to once again switch formulas. I have a follow-up with him in 2 weeks. I'm also waiting to hear from my GI surgeon if I need to have my mic-key button changed to a different size to see if that could help resolve some of these issues.
Yesterday, I said goodbye to my pain dr. who is leaving OHSU to soon start working at UWMC in December. I wasn't expecting to cry because I did enough of that when he broke the news back in September. Plus, this isn't goodbye forever because I'll be seeing him up there eventually. But he got teary! So me and my mom did, too. :'( He kissed me on the cheek and hugged me tight. We've been best buddies. :'(
Today, I slept until 3 pm! 17 whole hours. I've been so exhausted. Thankful that I don't have any more appointments for the week. :)
Thank you for reading and praying,
kerissa
A couple weeks ago, I started dealing with bad spasms in my small intestine and not being able to tolerate j-tube feeds---this is still going on today. The spasms cause my mic-key button to pop out partly over and over again. I haven't been able to eat solid food without a lot of pain, so I'm currently on a soft food diet. Last week, I also started experiencing dizziness every single day and night...it was horrible and I just felt unwell. Whenever I had doctor appointments, my blood pressure was checked each time and the numbers kept getting lower (my lowest recording was 80/62 and I'm usually 113/80ish). No wonder I didn't feel well!
Nothing was resolving, and last week, both my GI surgeon and GI specialist were out of town. My GI surgeon's resident squeezed me in---he thought maybe the "balloon" on the j-tube had too much water in it, but there was only 1 ml in it. So he wasn't sure what was going on.
This past Monday, the dizziness bothered me so much and I was dehydrated. Two nurses at both GI clinics said I should go to the ER to get IV fluids and labs done. Also, when I finally heard back from my GI dr., he wanted me to get an x-ray with contrast dye to check tube placement. So I spent 9 hours in the ER Monday evening. They gave me a whole liter of IV fluids and pain medication, and that helped a lot. :) The ER docs consulted with the blue surgery resident team for the spasms/tube issue. After I had the x-ray, the surgery residents studied the images and came to the conclusion that the j-tube was in the right spot and had not migrated. They believe that the dizziness was from dehydration and not getting enough nutrition. Regarding the spasms issue, they think it's from small intestinal dysmotility---not good news. But they're leaving this up to my GI specialist to figure out. We were able to connect with him, and he is not entirely sure---it could be dysmotility or an ulcer near the feeding tube.. He's starting me on an anti-spasmodic to see if that will help me tolerate solid food and tube feeds. He also mentioned I may need to once again switch formulas. I have a follow-up with him in 2 weeks. I'm also waiting to hear from my GI surgeon if I need to have my mic-key button changed to a different size to see if that could help resolve some of these issues.
Yesterday, I said goodbye to my pain dr. who is leaving OHSU to soon start working at UWMC in December. I wasn't expecting to cry because I did enough of that when he broke the news back in September. Plus, this isn't goodbye forever because I'll be seeing him up there eventually. But he got teary! So me and my mom did, too. :'( He kissed me on the cheek and hugged me tight. We've been best buddies. :'(
 |
| My new favorite picture which was taken last month. He's so sweet. |
Today, I slept until 3 pm! 17 whole hours. I've been so exhausted. Thankful that I don't have any more appointments for the week. :)
Thank you for reading and praying,
kerissa
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