Dad in the hospital; any ideas?

[roseanneinia]

Here’s what’s happened since my one and only previous thread (new poster on page 2):

He had his third round of Vidaza in November. 4th was scheduled Christmas week. They decided to postpone it a week because of holidays. A port was installed in his chest on 12-28. On 12-31, when he went for tx, the port was very difficult and painful to access. finally gained access and got the tx. Also discovered he was febrile. Prescribed antibiotic. The area where the port was installed bruised tremendously. Most of his right side turns black and purple. Sees the port surgeon on 1-3 who says “you just bruise easy” and assures him everything is OK. Still running a fever. 1-4 severe nosebleed; like a faucet. We estimate 1 to 2 pints of blood loss. Get him to ER because it’s after hours. Horrible experience with ER doc who seems ignorant about MDS. He did get the bleeding stopped with very painful electric cauterization. Dad was so weak and obviously very sick. Doc begins giving us discharge instructions. Mom asks, don’t you think he needs to be admitted? Doc says, no. I ask, Shouldn’t you at least do a CBC and see where his counts are? The nosebleed could be from low platelets. Doc says, no, even if I did one I probably wouldn’t do anything. He sends us home. Dad weakens over the next 36 hours. Sunday morning (1-6) we take him back to the ER where they do a CBC first thing and discover his platelets are at 7. He gets admitted, gets two whole units of platelet transfusions and two units RBC. Has an immediate reaction to the platelets (hives, swelling), a shot of benadryl stops that. They try to access the port all day (very painfully!) and are unsuccessful. Two more antibiotics are added. So he is getting Levaquim (sp), Zythromax (sp) and Vancomycin. His surgeon does get the port working Monday morning and it is a big help. His arms are so bruised from all the poking with the low platelets. Platelets get up to 30 by Monday morn then drop to 14. gets 2 more units of platelets Tuesday. Tuesday afternoon he develops pain in left side just below rib cage. Pain so bad he gets morphine. Doc orders CT scan Wed. Finds pneumonia in left lung. Got more platelets today as they were down to 10. BMB done today and said we would have some preliminary results tomorrow. This is day 11 for the fever.

Please share your thoughts with me. Give me some good questions to ask his hematologist tomorrow. Thanks for any advice you can give.

[eve]

are you kidding me – the hospital discharged him without doing a cbc – where the hell is this place located – i am speechless – he was running a fever and they sent him home –

question to ask his hematologist – i would ask him to refer you to a doctor that has experience treating mds patients

eve

[estee]

I am so sorry the medical community is giving you so little support. I can’t believe the ER doctor would not admit him.
I’m surprized they delayed scheduled Vidaza because of the holidays. I also think your regular doctor should have been willing to see him after hours or at least consult with the ER.

[jaxem]

rose
wow! what an experience. sounds like he needs to get stabilized before doing anything. he’ll probably get lasix to dry up the lungs. he needs to get back on the vidaza asap but cure the infection 1st. good luck!

[Jack_dup1]

from now on, assume ER doctors are idiots,because they assume you are. Then you can be pleasantly surprised when they get something correct. I went to the ER last month for shortness of breath and fever, without O2 my percentage was 82%, he was going to send me home without O2, when I asked about it, he actually said “you know, Oxygen can be bad for you”, at that point I insisted on O2, went home and then to my Doc on Monday, ended up spending 21 days in the hospital and having an open lung biopsy. You have to be assertive with these people.
Jack

[Neil]

The series of events your Dad experienced is beyond belief.
Am not certain what hospital he has been in, but I am uncomfortable with his treatment.
It may be time to have a very long and pointed discussion with his hemotologist and develop a very clear understanding what you/he can expect in the future.
For example—last Sunday at about 4AM I developed a nosebleed. It took me till 8:30 to get it under control. Since it was stopped and was early Sunday AM I did not call in.
On Mon AM I went in for my radiation treatment. At that time I spoke to one of the radiation oncology nurses and filled her in on the bleed. On Tue I saw my hemo/onc and he was full of questions about the event. On Thur I saw my Radiation oncologist. He was up to speed. Both my throat therapist and physical therapist were aware of my situation. I have 6 docs and 9 nurses or technicians tending to me. They were all up to speed. I was totally amazed. It seems I can’t burp without all of them becoming aware.
At one point you mentioned he was on Procrit and it did not work. Did they suggest Aranesp? Much like Procrit but lasts longer and works on some where Procrit does not. It is also a good idea to know his erythropoietin and iron levels. If epo is normal to high chances are Procrit/Aranesp wont work. If normal to low if may very well increase reds. Both of them need iron to function. If iron is low chances are neither will work till his iron stores are normal.
There is no way he should be subjected to this kind of treatment. Its time to get them serious about how they are going to handle him or you may want to speak to some other docs. A second opinion would not hurt and a different attitude would be refreshing. It might be possible they are over their head. If so get him to a facility that is more knowledgeable/qualified

[bety]

Neil,
What did you do to control your nosebleed?
My husband has a serious problem with nosebleeds related to a low platelet count and hypertension.
When the hypertension is under control, the bleeding tends to subside to a large extent.

———————-
Husband, 88, dx rars with pancytopenia. Prbc tx and tx plt dependent around once per week. He now sleeps a great deal and does not read as much as he would like.

[Neil]

Hi Bety,
Used lots of tissue, kept my head tipped back, breathed in through my nose out my mouth and put a cloth filled with ice chips next to my nostrils.
This was not a severe bleed. Just took time to clot up. Did not use any Nosebleed QR.
Still have traces of blood when blowing and cough up a few clots.
I can expect this to occur every Dec-Jan when the humidity goes down. Have been keeping the humidity at about 40% unless the outside temp goes way down. Then just keep the bedroom at about 40%.
I also get lots of relief when taking a hot shower. Have to be careful I dont stay in too long.
Would be very very careful with my approach. Believe your husband is much more sensitive to bleeds and needs more professional help than I.

[bety]

Neil,

Thank you for your rapid response.
Nosebleed QR is sometimes effective. I think the ice chips is a great idea. I will certainly try it.

I believe keeping your head tipped back might contribute to coughing up clots. The nasal bleeding tends to trickle down the throat and form clots that are coughed up.

You are right about Ed’s problem being more serious. I think that after 2 units of blood, Ed suffers from volume overload, which might increase the pressure on the fragile blood vessels in his nose. In addition, his hypertension becomes more difficult to control immediately after a tx. The medication that he is on (hydrochlorothiazide), is a diuretic, which causes both sodium and potassium to be eliminated. Since the K is needed for clotting, I sometimes give him a low dose of the K to replace that which has been excreted. Incidentally, a side effect of the medication is the lowering of platelets and wbc’s. I just ordered some D3, which someone posted that might be helpful.

After three days of mild to moderate bleeding, his bleeding seems to have subsided.
If he is bleeding during meals, I use something called “Nasal Cease” (specially treated sterile nasal pack), which is effective for several minutes. I also pack his nasal passage with a sterile piece of gauze impregnated with a little Afrin. I am grateful to someone in the forum, who posted using prescribed Amicar tablets. I find them helpful with Vitamin C and sometimes some calcium.

My druggist suggested I try placing folded gauze under his upper lip to place pressure on a blood vessel leading to the nose.

The forum has been invaluable in helping me control Ed’s bleeding.

Neil, I always pay special attention to your posts. You are so very knowledgeable; I often go back and re-read what you have contributed.

[bety]

Neil,

I forgot to mention that I try to keep Ed’s nasal passages lubricated with antibiotic ointment, Vaseline, or something called Boroleum to prevent cracking due to the low humidity. Our ENT doctor recommended the above as well as a saline nasal spray and a decongestant such as Afrin. Ed cannot tolerate a humidifier’s cold blast, so I keep a pail of water next to the radiator.

[Neil]

Hi Bety,
I use a saline nasal spray, but I tend to stay away from decongestants. They dry me up too much thus the cracking.
I also picked up a Holmes “humidifier” at Sears. It has 3 speeds, the slowest is almost silent and puts out a subtle amount of moisture. I use the high speeds when I’m not in the room.
I also get relief by putting hot water in the sink and breathe in the moisture through a wash cloth. Its a crude method but effective short term.

[Neil]

HI Roseanneinia
Sorry we got off your thread. Hope the earlier messages gave you some food for thought. As a rule patients with RARS can be treated successfully over time.
Do you think Zythromax might be Azithromycin? An antibiotic that is taken over 5 days. 2 tablets on day 1 and 1 on the next 4.
I have had very good success with it for sinus infections. But there have been times when I had to take 2 sessions about a week or two apart. Not sure what the implications of the other 2 drugs might be.
The first thing my hemo/onc does when I arrive is to get a CBC. He never sees me without knowing my counts.
Whenever I get platelets or RBCs Benedryl and Tylenol (pills)are given first to avoid any reactions. When I get Cetuximab they start off with a bag of Benedryl.
It might be necessary to give them a reminder. Sometimes there is a lot going on and easy to forget.

[roseanneinia]

Thanks to all of you for your support and assessment of things. Even though I have not posted much I feel as though I know many of you well from reading through the previous posts when I first came here. I wish MDS had never touched any of your lives, but I admire the strength and tenacity with which you face it. Thank heavens you are here for the newly diagnosed to find and learn from!

Dad’s MDS has transformed to AML. The bone marrow biopsy taken on Thursday showed 50% blasts. Back in September I was told he had 0 blasts! Can this be? And I am now skeptical about the RARS categorization. His fever continues and he has had quite a bit of pain in the spleen area. The pain is being adequately managed now. He and Mom have decided against pursuing any further chemotherapy. It was their decision and we support them in it. With the supportive care he will still get all the platelets, RBC’s, oxygen and pain meds he needs. We are going to meet with Hospice tomorrow.

The ER care Dad got last Friday was abhorrent and I will be bringing it to the attention of the hospital administration, the head of the ER and whoever contracted the group that brought that guy in.

Dad is very happy with his oncologist/hematologist though. I’ve given him and Mom names of references that several folks have given me for second opinions and they’re not interested. I wish we would have gone to the University of Iowa as soon as he was diagnosed, but they were just so comfortable being treated close to home.

Thanks again for listening and caring. You all are in my prayers.

[Neil]

Is a trip to The Mayo Clinic a possibility?
David Steensma is located there. He is one of the best MDS docs in the country. As a rule it would be a one day consultation using existing BMB and other current results.
Could be worth a phone call 507-538-0107

[roseanneinia]

I wanted to update you all. Dad died in the hospital on Jan. 18 from the AML. I just couldn’t bring myself to come on and post any more bad news.

Now, more than two months after his death, it still seems unbelievable that this disease we had never even heard of before last September could take a fine man down so fast.

I continue to check this site at least once a week and pray for those of you who have been affected by MDS. And I will pray unceasingly for a cure. God bless you all.

[Author]

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