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Post-Transplant Blog, Pt. 8

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Posted 8/13/2013 12:41 AM (GMT 0)
Connie

I'm so sorry to read this post

Talk about one thing and then another

What are your oxygen saturation scores like? Do you need oxygen at home? Would that make you feel better? If no one can take a semi emergency pulmonology appt should you have you to coordinator pull some strings?

Is your pulmonologist also a cardiologist. Could this be congestive heart failure? When is this an ER emergency?

I am worrying about you.

Hugs

Carol
Posted 8/13/2013 1:27 AM (GMT 0)
Yes I'm worried too. I would park myself in the waiting room in 3 south (get a valet to take you up) and tell them you're going to wait for a cancellation because you can't breathe and you're scared

What if it happens to get worse in the middle of the night and you don't even have the breath to call for help?

On second thought I would go to the ER and tell them you're alone and they must do something because you're worried so much. Even if you're not so worried, you will get SOME relief and maybe a script for home oxygen until you see your pulmonologist. They won't let you leave while your O sat is low.

When I got that flu so bad, they gave me home oxygen which really helped and then when I didn't need it anymore I kept getting it for Richard when he had trouble. I had the the tanks, both portable and not, and also the concentrator that doesn't require tanks. The medical supply place gave me anything I asked for In that regard. I think it was Linn medical?

Please keep us posted Connie :)

Hugs

Post Edited (Mae be here) : 8/12/2013 7:34:59 PM (GMT-6)

Posted 8/13/2013 2:17 AM (GMT 0)
Carol, I don't even know what my O2 sat is. Only time they've checked it is after a surgery. I doubt that oxygen would help at all in this case. I'd still be breathing through fluid. If I can see a pulmonologist, I will ask about home O2, though. I'll have no problem with Medicare. The TC hasn't been able to "pull strings." I don't think she knows what to do about anything that is not strictly liver.

I have NO heart disease. That's been checked several times recently, through EKG and echocardiogram.

If it comes down to it, I will get the chest CT and meet with the pulmonologist on the 5th. If things get bad, I can go to the ER. I have an alert system here at home, next to my bed and in the bathroom, that I can pull and get Rescue here if it's an emergency. But "really bad" doesn't come on suddenly...it just progressively gets worse.

Hugs,
Connie
Posted 8/13/2013 2:45 AM (GMT 0)
This really stinks. Your TC needs to prod the pulmonologist(s). Suffering like you are, for so long is what your TC should be taking care of. She may not know much beyond livers, but she needs to be advocating for your health in all matters.

If you're having trouble breathing, then additional oxygen is probably needed. When you can't breathe deeply, not enough oxygen is getting into your blood. That adds to your feeling more tired, along with effects from Hep C.
Posted 8/13/2013 6:46 AM (GMT 0)
I am so sorry to hear this Connie. It just seems wrong that they are going to leave you hanging there and aren't working to get to the cause right away. You need some relief soon.

I'm happy to hear that it isn't your heart anyway, would hate for you to have to add another doc to your list of doctor visits you have to get yourself too.

Hope you aren't too uncomfortable to rest, you need plenty of that.

Take care, doni
Posted 8/13/2013 2:57 PM (GMT 0)
How's Connie this morning?
Posted 8/13/2013 6:07 PM (GMT 0)
Doing okay, Mae. I slept really well. I have to do some things before getting ready for a (non-medical) appt. late afternoon/early evening.

Hugs,
Connie
Posted 8/14/2013 8:16 PM (GMT 0)
I got through to the Pulmonology Dept. this afternoon looking for a sooner appt. than Sept. 5th. My pulmonologist had a cancellation on Fri. at 9, but I've had a busy week, with another appt. tomorrow. I don't think I'll be able to get up on Fri. So I'll call again next week, looking for another cancellation.

The SOB and coughing is about the same...no worse. I need some relief from the high 90s heat and humidity. It's supposed to rain this weekend and lower the temp to 88 on Sat. But we have at least another 1 1/2 mos. of hot weather.

Hugs,
Connie
Posted 8/14/2013 9:57 PM (GMT 0)
This is when you almost welcome hurricane season.

Glad you're not a worse SOB!

R O F L
Posted 8/15/2013 12:16 AM (GMT 0)
Yup. Yup.

Hugs,
Connie
Posted 8/21/2013 2:59 AM (GMT 0)
I had an appt. with my Plastic Surgeon today, who pronounced me HEALED! Hallelujah! Healed of the midriff wound, that is. Then he said he was done with me. WHAT? I thought the point of getting healed was to have a skin graft. Only last month, he reaffirmed that I would need a skin graft and then heal from that before having a hernia repair. Today, he didn't remember ever saying I needed a skin graft, when we have discussed it at every visit. His notes didn't mention skin graft except at the very beginning, where he said if it didn't heal properly and there was not enough flesh between the bowel, that skin graft would be needed.

So he has changed his tune. He wants me to see my TP surgeon, who would do the hernia repair, to get her opinion and decide if I am even a hernia repair candidate. I am THRILLED if I won't need a skin graft, but praying that I can have the repair w/o complications. So I'm trying to get an appt. for a consult in late Sept. Meanwhile, the PS froze a mole on my back today. It is under the back of my bra and getting irritated. If that doesn't work, he said to give him a call and it may need to be biopsied (taken off.) He wants the surgeon to call him with her plan for my hernia; otherwise, I have no followup appt. with him.

My breathing is not terrible, but I don't know how much longer until I will have to be drained again. The next big appt. will be with my Pulmonologist on Sept. 5th. Prior to that, I will have a CT scan of my chest, the same day.

Hugs,
Connie
Posted 8/22/2013 4:17 AM (GMT 0)
Hi Connie.

Thankfully, it sounds like your improving. Hope you get your issues with the lungs cleared up soon.
Posted 8/22/2013 5:35 AM (GMT 0)
WD, for some unknown reason, my breathing has been better the past 5 days, though I'm still coughing up junk (another side effect of the pleural effusion) and have SOB if I walk too quickly or bend over too much.

Good news is that today I got an appt. with the neurosurgeon for Sept. 3rd to discuss my options for treatment of my L3 fracture. I saw him in June of 2012, and at that time he mentioned an injection of cement. However, it wasn't bad enough for that then. Now it is. I will also have a spinal x-ray and an MRI of my back on Aug. 30th. I had hoped I could get a break from Mayo for the rest of this month, but I know these things need to be done. Next month looks just as busy. I'm there so much, it's like working. And it takes a lot out of me. But I keep marching on and doing whatever I can to get and feel better. At least now it's past the point of just staying alive. Once these problems are resolved, maybe I can start treatment sometime next year. (Please, God, before I go into cirrhosis.)

Hugs,
Connie
Posted 8/22/2013 12:54 PM (GMT 0)
Hey Connie,

When I was in for my transplant, the pulmonogists gave me this new breathing device called the Acapella. You stick it in your mouth and take deep breaths in and out continuously. When you breathe out it makes a rumbling noise so you know you are taking deep enough breaths. After I do a set of 15 in and outs, I take it out of my mouth and attempt a cough. The cough brings up any phlegm I might have. I add a set of 5 in and outs to my " workout" each day.

It is so much easier than that spironometer.

My TC nurse mentioned I have slight pleural effusion. What is this exactly???

Thanks and take care turn
Posted 8/22/2013 2:20 PM (GMT 0)
@ Susie... A pleural effusion is a buildup of fluid between the outside of the lung(s) and the chest wall. I "think" this is typical after surgery. My mom also had pleural effusion after her transplant, that they monitored with chest x-rays, etc. Make sure to do your breathing exercises, as those will help rid the pleural effusion. Glad to see you're doing better :-)

@ Connie...I hope you get a break with all your appts, soon. Sounds like you're getting all your necessary appts completed, thankfully.

Post Edited By Moderator (hep93) : 8/31/2013 12:46:51 AM (GMT-6)

Posted 8/22/2013 3:15 PM (GMT 0)
Good to get these things out of the way so to be done before TX starts ;)

Hugs
Posted 8/25/2013 5:20 AM (GMT 0)
WD, it is not really typical after TP. And I will be 2 yrs. post transplant in Oct. This only started in April. They do not know why, but I do suspect my liver, as the hep C is causing elevated enzymes and is attacking my new liver...has been since a month post transplant. However, pleural effusion can also be caused by congestive heart failure, liver cancer, and other causes. Heart problems and liver cancer have been ruled out in my case. There usually are some breathing problems after TP, from having a breathing tube or respirator for so long during the long, 5-10-hr. surgery. Usually there's a lot of phlegm to be coughed up and they will have you using an incentive spirometer frequently. They also gave me something like Susie described...it reminded me of a "bong" for smoking pot, just from the bubbling sound it made and the ease of blowing in and out.

I do feel that I am retaining fluid in my belly, perhaps just under the skin, which has happened before, rather than ascites. I have been gaining as much as 1 1/2 lbs. overnight, nearly every night, for the past 2 wks. I haven't weighed this much since I blew up after they opened me up again 5 mos. post TP. I have been eating a bit more sweets than usual, due to company, but not enough to be gaining that much. I am going to really watch my sodium intake and diet, and perhaps every other day take more Lasix. Of course, I plan to talk to my TC about this tomorrow and hopefully get an abdominal CT soon. Anyway, perhaps the fluid retention has something to do with the pleural effusion, as well. Fluid in the pleural space can be seen easily on x-ray or ultrasound. I will be having a chest CT on Sept. 5th.

Sat., I received an appt. in the mail for Dermatology, regarding the itching...but not until Oct. I know that is one of the most difficult specialties to get in to see. So I got all the appts. I had requested, except for one with my TP surgeon re: the hernia repair. So maybe I am closer to having everything treated, making me one step closer to hep C treatment. Hernia repair will take some months to recover from, though, so I don't foresee treatment until sometime next year.

Hugs,
Connie
Posted 8/31/2013 7:15 AM (GMT 0)
Hi, everyone. I'm here with an update.

Fri. AM, the 30th, I had a lumbar spine x-ray and at noon an MRI of my entire spine, then more shots of my lumbar spine. For those who don't know, I have a stress fracture of L3.

Since Thurs., I've been sick with a cold, which has included diarrhea...though that could possibly be from ingestion of too many fresh figs. Yesterday, the runny nose had stopped, but I still felt draggy and still had the runs...and an attack came on suddenly at Mayo after the MRI and didn't quite entirely make it into the toilet. Now I know how Lactulose takers feel. I've been taking my "miracle cure" (at least for me) of Alka-Seltzer Plus and large doses of Vit. C every 4 hours.

I got home, cleaned up, and napped for 3 hours, waking up very discombobulated...thinking it was the middle of the night and wondering why the cat was in bed with me, as I always shut him out at night. =^..^=

I will see the Neurosurgeon next Tues., the 3rd, for results of the x-rays and MRI, as well as find out what he can do short of surgery. We had previously discussed a cement injection. They do this with only a local.

Next Thurs., the 5th, I have a day from hell at Mayo. Have to be there at 7 AM for labs, then a CT of my chest at 10 AM, followed by a consult with my Pulmonologist at 3:45 PM. What a long day! I need to be drained NOW...so short of breath..., but am waiting for this appt. to be completed first. I am going to pressure the doctor to find the cause of this pleural effusion, by whatever means possible. He will set up an appt. for draining and I will beg for conscious sedation.

Susie, I have a breathing device something like you described. Will pull it out and start using it again. Thanks for the reminder.

Sept. 25th, I have a consult with my TP surgeon and her PA about doing a hernia repair on my midriff, since the plastic surgeon declared it healed earlier this month.

Oct. 8th, I am scheduled for a Dermatology consult about the itching.

And every month, I have labs.

So I will be quite busy this coming month and probably the next one, as well. Please bear with me if I am not here some days.

Thanks and hugs,
Connie
Posted 8/31/2013 3:11 PM (GMT 0)
Hi Connie.

I hope you feel better. You have a lot going on and I hope you get lots of rest and hopefully, you will have lots of help.

Hugs!!!
Posted 8/31/2013 7:33 PM (GMT 0)
WD, thanks. I'm getting rest this weekend....slept until 2 and said no to my daughter coming over this weekend, plus canceled a get-together. But I have no help...as usual. I do get the volunteers at Mayo to push me from one building to the next, as it has become too much for me to walk with the SOB.

There is a Labor Day luncheon on Mon. in the Community Room here. I'm feeling better now, so will probably go. I got word that they will have a ham and roast beef. I would eat ham. Everyone will be taking side dishes---enough for 6 people---so I had my friend pick up 2 lbs. of Southern-style potato salad for me to take...not up to cooking anything...and I can eat that. So I'll probably go. I have not been going to the luncheons and dinners here where there is food cooked by others, but now I feel more comfortable about it at 22 mos. post TP, if I use caution, which I always do.

Have a good long weekend!

Hugs,
Connie
Posted 9/1/2013 1:55 AM (GMT 0)
Hi Connie.

It's good to catch up on sleep. You have been very busy with appointments. I can't imagine how tired you must be. Hopefully, you will feel rested enough to enjoy the luncheon.

Hugs.
Posted 9/1/2013 4:21 AM (GMT 0)
Thanks, WD. I seem to be over the cold except for some lingering fatigue. But that could just be from my hep C and SOB. Have also been a little dizzy and know that's from lack of oxygen to the brain.

How are you doing these days, W.D.? More relaxed about your mom?

Hugs,
Connie
Posted 9/4/2013 12:13 AM (GMT 0)
Connie,

I get sad when I hear you talk about not doing so well. Is your SOB still bad? Is there nothing they can do?
What is your next appt and when?

Thinking of you and all you do for folks, and it's just unfair that you continually have these bumps in the road.

Hope you get some relief soon!

Big hugs,
Posted 9/4/2013 2:19 AM (GMT 0)
Thanks, Mae. I saw the neurosurgeon today about my back. He had good news and bad. The good was that the the stress fracture had healed on its own. The bad was that I have spinal stenosis between L4 and L5. The only cure for that is surgery with bone spurs removed and steel rods placed. He said I'm not a good candidate for surgery right now, due to the pleural effusion. I was extremely SOB today and kept waking up every half hour last night coughing. That's part of the problem...it causes coughing and congestion. The nebulizer with medication that my neighbor loaned me seemed to make it worse. So the doc made an appt. for me with Pain Clinic...probably an epidural of Prednisone. But that's in early Oct.

I'm also blowing up and spoke to my TC about that today. She wants me to discuss it with the TP surgeon on the 25th.

I have to do my weekly shopping tomorrow, then be at Mayo at 7 AM on Thurs. for labs, a chest CT, and consult with my pulmonologist. This is when I will push for him to find out what is causing this. Also, to set up draining ASAP. In fact, I would like to be admitted for a 24-hour stay to be drained under a general...if he will do it. Otherwise, return on Fri. for draining. I needed a thoracentesis last week, but instead held on for the CT and consult on the 5th.

Many appts. of various kinds are scheduled for this month, so I will update as each one is completed.

Hugs,
Connie
Posted 9/4/2013 2:51 AM (GMT 0)
Hi Connie.

I hope they find out what's causing your pleural effusion. I can't imagine the discomfort you are feeling.

What does SOB stand for???

Is there anyway you can get a home health aide (thru Medicare), that can help you temporarily, while your not feeling well?

Hugs.
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